a question about deaf/hoh people with secondary disabilities

rjr2006

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Do you know anyone who is deaf/hoh with secondary disabilities (deafblind is commonly known)?

I am profoundly deaf and have Cerebral Palsy. Not everyone knows about my rare case especially interpreters. i strongly believe that it is important to educate others about deaf/hoh with secondary disabilities.
 
Do you know anyone who is deaf/hoh with secondary disabilities (deafblind is commonly known)?

I am profoundly deaf and have Cerebral Palsy. Not everyone knows about my rare case especially interpreters. i strongly believe that it is important to educate others about deaf/hoh with secondary disabilities.

My son attended school with 3 students that had CP and were profoundly deaf. Two of them were younger, one was close to his age.

There are a number of deaf blind psoters on this board, as well as several poster who are muli-handicapped.
 
I agree with you about educating others about secondary disabilities. I know I do everything I can to educate the general public.

I'm totally deafblind (although I can hear with bilateral CIs) and know several others on this board and in my community who are DB.

In addition, one of my best friends has a moderate hearing loss and is in a wheelchair due to spina bifida.
 
My son attended school with 3 students that had CP and were profoundly deaf. Two of them were younger, one was close to his age.

oh, i see. where did your son attend school?

Deaf/CP is a very rare case and personal assistants need to learn how to deal with people such as myself.
 
oh, i see. where did your son attend school?

Deaf/CP is a very rare case and personal assistants need to learn how to deal with people such as myself.

At the time, he was attending St. Rita School for the Deaf. I agree that personal assistants need to be trained, and these children were very fortunate that St. Rita has a well trained and very capable staff. The child that was close to my son's age had a milder form of CP, and therefore, had enough fine motor control to sign well. The younger students, however, had problems with even gross motor control, and they used communication boards. All were very intelligent, very personable, sweet kids.

I agree that education is sorely needed in this world. Too many people make assumptions based on superficial criteria.
 
My dad and his sister are (from age about 7 and 8) profoundly deaf and totally blind. Dad has two artificial eyes. He retained speech, but his sister (the eldest) did not. She has no speech and has considerable difficulties expressing complex ideas using the manual and sign. We do not know why she lost her speech whilst dad didn't.

Generally, it's hard for people to understand dual sensory problems. People are usually (at least these days) a bit more enlightened and aware.

Dad and aunty always say the deafness is the worst problem, it is so isolating. I have found this with my own hearing loss - terribly. And I have only a mild/moderate loss and even this cuts me off in some situations.

There's lots of lovely techy equipment like we can text on our mobiles instead of struggling on the phone - but of course that's no use to someone who can't see.

And there are audio devices for blind people. But they're no use to deaf people.

So it's difficult to find technologies which help deafblind people.

One thing all three of us agree on is: digital hearing aids are great! :dance2:

It's also difficult for many people to understand that they have literally no vision at all. Nothing whatsoever. Often people say "But surely he can see something..."

On a lighter side - when I was a kid, dad used to tease me with his artificial eyes. When you first have your eye removed, you need a small prosthetic eye, and gradually over the years, you have to have bigger ones, until the socket settles down and you'll just have to have your eye polished every so often. Dad used to hide his older, smaller eyes in places like my lego and my bed to make me squeal! hahaha.... :giggle: hence, I can talk about it in a very natural way and don't feel uncomfortable about it. Thanks dad :ty:
 
At the time, he was attending St. Rita School for the Deaf. I agree that personal assistants need to be trained, and these children were very fortunate that St. Rita has a well trained and very capable staff. The child that was close to my son's age had a milder form of CP, and therefore, had enough fine motor control to sign well. The younger students, however, had problems with even gross motor control, and they used communication boards. All were very intelligent, very personable, sweet kids.

I agree that education is sorely needed in this world. Too many people make assumptions based on superficial criteria.

Agreeable! Yeah, not too many people are exposed to someone like me. I was labeled mentally retarded twice in my life. My folks were very furious at the psychologist in 1996 and the govt in 2000 for labeling me.........
 
My dad and his sister are (from age about 7 and 8) profoundly deaf and totally blind. Dad has two artificial eyes. He retained speech, but his sister (the eldest) did not. She has no speech and has considerable difficulties expressing complex ideas using the manual and sign. We do not know why she lost her speech whilst dad didn't.

Generally, it's hard for people to understand dual sensory problems. People are usually (at least these days) a bit more enlightened and aware.

Dad and aunty always say the deafness is the worst problem, it is so isolating. I have found this with my own hearing loss - terribly. And I have only a mild/moderate loss and even this cuts me off in some situations.

There's lots of lovely techy equipment like we can text on our mobiles instead of struggling on the phone - but of course that's no use to someone who can't see.

And there are audio devices for blind people. But they're no use to deaf people.

So it's difficult to find technologies which help deafblind people.

One thing all three of us agree on is: digital hearing aids are great! :dance2:

It's also difficult for many people to understand that they have literally no vision at all. Nothing whatsoever. Often people say "But surely he can see something..."

On a lighter side - when I was a kid, dad used to tease me with his artificial eyes. When you first have your eye removed, you need a small prosthetic eye, and gradually over the years, you have to have bigger ones, until the socket settles down and you'll just have to have your eye polished every so often. Dad used to hide his older, smaller eyes in places like my lego and my bed to make me squeal! hahaha.... :giggle: hence, I can talk about it in a very natural way and don't feel uncomfortable about it. Thanks dad :ty:

Just venturing a guess here, because I do no have all the info, but sounds like your auntie might have some aphasia problems, also. That could interfere with her ability to express herself manually.

And I agree--we must retain our senses of humor. If we are accepting of our own conditions, it amkes others more comfortable as well.
 
Agreeable! Yeah, not too many people are exposed to someone like me. I was labeled mentally retarded twice in my life. My folks were very furious at the psychologist in 1996 and the govt in 2000 for labeling me.........

That is truly awful! And that is what I meant by judging on the wrong criteria. Just because someone with CP has difficulty with their speech, they are looked at as less than intelligent. The same with deaf who attempt oral communication. So many are looked at as less than intelligent based on their speech alone. That is so wrong!
 
I'm visual/hearing impaired. I also tend to have problems with speech like over the phone -- not very comfortable with using any phones since I'm better at text-based communications like relay, e-mail, and text messaging.
 
Yes, I think there is something 'more' going on as well as just lost speech. I know because we also use braille to communicate, and her braille has the same expressive difficulties. It isn't BSL grammar - that'd be fine. It's something else. Mostly we understand and can get to the bottom of what she means. Like she signs "sausages" for tights (pantihose if you're american). That's because the shape of the packet of the tights she likes reminds her of a string of sausages.

I have said to her - if you have something new that you like, KEEP the wrapper and SHOW me, so that I can explain what it is and where to buy it. That was after going around sainsburys one evening for two hours searching for "chocolate spots" which turned out to be Ferrero Rochet!! LOL

I think at least some of the problems are caused by she hasn't actually SEEN any sign for 40 years. Therefore she's using half-forgotten signs or signs that we've never seen before but that she's remembering. Also, she'll often invent her own sign, which is ok, but much harder to understand someone miming the shape of something - which is what she's often doing.

Alot of people seem to be better aware these days... and when people say "the wrong" thing - it seems to be by mistake and not badly intended.

But occasionally, you are completely FLOORED by something that a person says.

For example, we were all out in a local pub for Christmas Dinner last year, and the landlady said "ahhhhh ... are they in somewhere?" Meaning - that we'd "brought them out" for the day.

I replied that No these are my family and we are all out for a Christmas dinner.

She still didn't get it. There were more "ahhhhhs" and I gave up and started ordering drinks.

Dad likes Baileys, so I ordered a Baileys in a chocolate cup for him. And the landlady said "ahhhh you can have the Baileys and he can have the chocolate". Obviously in her world disabled people don't drink, and they all live in institutions LOL

We've come a long way, but we do still have some way to go.

We're not going back to that pub next year - the cutlery was dirty "ahhhhh"
 
I have met deaf with CP, deaf with LD, deaf with MR...so yeah I have know people who have other disabilities that come with deafness.
 
Yes, I think there is something 'more' going on as well as just lost speech. I know because we also use braille to communicate, and her braille has the same expressive difficulties. It isn't BSL grammar - that'd be fine. It's something else. Mostly we understand and can get to the bottom of what she means. Like she signs "sausages" for tights (pantihose if you're american). That's because the shape of the packet of the tights she likes reminds her of a string of sausages.

I have said to her - if you have something new that you like, KEEP the wrapper and SHOW me, so that I can explain what it is and where to buy it. That was after going around sainsburys one evening for two hours searching for "chocolate spots" which turned out to be Ferrero Rochet!! LOL

I think at least some of the problems are caused by she hasn't actually SEEN any sign for 40 years. Therefore she's using half-forgotten signs or signs that we've never seen before but that she's remembering. Also, she'll often invent her own sign, which is ok, but much harder to understand someone miming the shape of something - which is what she's often doing.

Alot of people seem to be better aware these days... and when people say "the wrong" thing - it seems to be by mistake and not badly intended.

But occasionally, you are completely FLOORED by something that a person says.

For example, we were all out in a local pub for Christmas Dinner last year, and the landlady said "ahhhhh ... are they in somewhere?" Meaning - that we'd "brought them out" for the day.

I replied that No these are my family and we are all out for a Christmas dinner.

She still didn't get it. There were more "ahhhhhs" and I gave up and started ordering drinks.

Dad likes Baileys, so I ordered a Baileys in a chocolate cup for him. And the landlady said "ahhhh you can have the Baileys and he can have the chocolate". Obviously in her world disabled people don't drink, and they all live in institutions LOL

We've come a long way, but we do still have some way to go.

We're not going back to that pub next year - the cutlery was dirty "ahhhhh"

Oh yes, that does sound like a mild aphasia. Wow, people can be so rude! I don't blame you--I wouldn't frequent that pub again,either.
 
I have a genetic syndrome so I'm hoh with LD, clubfeet, low muscle tone, and other stuff.
 
it's difficult to find technologies which help deafblind people.

There are devices out there.
The problem is deafblind groups don't always let deafblind people know about them and in some cases they can be very expensive. Then there is the problem of lack of training. For example, I don't know anywhere here in UK where a deafblind person can be trained how to serf the net using a braille display. Yet the internet would be very benificial to most deafblind people if they could access it.

Also I ordered of those sonic devices that vibrate when obsticals are near. It's usually meant for totally blind people. It only came with print instructions so it's a good job that I can see and use a CCTV but have problems getting about in certain lighting conditions. In those situations I already find it very useful.

I'm thinking about getting a devise that will vibrate with noise as it might make road crossings a little safer but I'm not sure where to get them from.
 
Currently, at my summer teaching job (not at the deaf school but at the public schools) I am working with two deaf boys who have a range of other needs from aphasia, bone disorder, Williams syndrome, and some mild MR but I have seen their improvements academically big time compared to the last time I worked with them which was 3 years ago. I am amazed how much they have accomplished and I sent an email to the staff that work with them during the school year for a great job done!

At my school we have a population of deaf children with additional needs...
 
i strongly believe that it is important to educate others about deaf/hoh with secondary disabilities.

I have a congenital condition on my left hand/arm for which there is no name for it. Although I believe education is key for others, I don't have the time to be stopped by everyone who wants to know about my hearing dog and the whole nine yards. Even though the left arm stops me occasionally physically, I can do other things, as well as build up strength for it. rjr, at the same time, if you and I believe that education is key, then the people who want to know should know that education doesn't come free and should dig deep. I'm sure you're tired of people asking questions, then, after getting done talking with them, other people ask. Frankly, I don't even have the time for this.
 
There are devices out there.
The problem is deafblind groups don't always let deafblind people know about them and in some cases they can be very expensive. Then there is the problem of lack of training. For example, I don't know anywhere here in UK where a deafblind person can be trained how to serf the net using a braille display. Yet the internet would be very benificial to most deafblind people if they could access it.

Also I ordered of those sonic devices that vibrate when obsticals are near. It's usually meant for totally blind people. It only came with print instructions so it's a good job that I can see and use a CCTV but have problems getting about in certain lighting conditions. In those situations I already find it very useful.

I'm thinking about getting a devise that will vibrate with noise as it might make road crossings a little safer but I'm not sure where to get them from.
Bear in mind that not all websites (like WCTV - HomePage -- WCTV is a television station broadcasting news) are accessable -- meaning the website failed a validation with 247 errors and a there are a lot of errors in CSS (cascading style sheet).
 
That is truly awful! And that is what I meant by judging on the wrong criteria. Just because someone with CP has difficulty with their speech, they are looked at as less than intelligent. The same with deaf who attempt oral communication. So many are looked at as less than intelligent based on their speech alone. That is so wrong!

QFT! I'm actually of average intelligence but because I have good speech, my teachers thought I was much more intelligent than I really am.

My ex bf could not speak at all and hearing used to tell him to stop using his voice as they couldn't stand his speech. He's a genius with computers and his own English is better than my own. I think I'm prolly the only one in the whole world who actually misses his voice. :lol:
 
Even though my voice probably isn't quite the same as it used to be, so I'm told, I don't care, because it is MY voice and I own it. Makes me angry that people wouldn't like my voice or think it's not just like theirs or maybe I have forgotten how to pronounce something. I don't feel embarrassed about it any more. Since I stopped feeling ashamed of my voice I have been alot happier person and much more comfortable with my hearing loss.
 
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