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BeckyBoom

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I am the proud mother of a 3 year old boy named Patrick or as we call him Paddy.Paddy was born 3 months early but was surprisingly healthy.Once he caught up weight wise he was sent home without incident until 22 months of age.During the middle of the day one day his eye started to droop,and a week later the other.

We were admitted to the Children's for a week and a battery of test.All test came back negative or normal but they diagnosed him and treated him with Myastenia Gravis for the last year or so.Which they recently confirmed he doesn't have.

In the last year the paralysis has spread to his facial muscles he basically can not make facial expressions and had to chew with one side of his face. They did surgery to lift his eyelids but he lost all muscle function in the muscles that control eye movement and they are in a fixed position.During this progression he lost his ability to talk which was later found out to be due to paralysis and muscle fatigue in his mouth, tongue and throat.We still have no diagnosis and no idea if it will progress farther south then his throat at this point.

He isn't hard of hearing but he is unable to speak.We have been diligently teaching him sign language for about the last 8 months and he has picked it up quickly he signs roughly 300-400 signs right now.I have a low functioning Autistic younger brother and have worked in the special ed./non-profit system most of my life and had a decent signing vocabulary but my son is surpassing that faster than me and his dad can keep up and we're struggling to find classes and support groups for parents learning sign.The school has pushed for us to use a touch to speech device to do his talking.We have opted against it and feel that signing is far superior for him and are thinking about getting him an interpreter for when he starts kindergarten.

We don't have any deaf or HoH family or friends so we have very little knowledge about how to get more involved in the deaf community.And meeting other parents learning to sign here in Utah.

I know this is a site for deaf and HoH people and or their deaf/HoH children.But our situation is unique and I feel we don't really fit in anywhere so I hope it is o.k. to be here and I look forward to getting to know you all.

~~Becky~~
 
There are a lot of people here learning ASL. I'm sure few of them will be happy to help you. The best luck.
 
BeckyBoom said:
I am the proud mother of a 3 year old boy named Patrick or as we call him Paddy.Paddy was born 3 months early but was surprisingly healthy.Once he caught up weight wise he was sent home without incident until 22 months of age.During the middle of the day one day his eye started to droop,and a week later the other.

We were admitted to the Children's for a week and a battery of test.All test came back negative or normal but they diagnosed him and treated him with Myastenia Gravis for the last year or so.Which they recently confirmed he doesn't have.

In the last year the paralysis has spread to his facial muscles he basically can not make facial expressions and had to chew with one side of his face. They did surgery to lift his eyelids but he lost all muscle function in the muscles that control eye movement and they are in a fixed position.During this progression he lost his ability to talk which was later found out to be due to paralysis and muscle fatigue in his mouth, tongue and throat.We still have no diagnosis and no idea if it will progress farther south then his throat at this point.

He isn't hard of hearing but he is unable to speak.We have been diligently teaching him sign language for about the last 8 months and he has picked it up quickly he signs roughly 300-400 signs right now.I have a low functioning Autistic younger brother and have worked in the special ed./non-profit system most of my life and had a decent signing vocabulary but my son is surpassing that faster than me and his dad can keep up and we're struggling to find classes and support groups for parents learning sign.The school has pushed for us to use a touch to speech device to do his talking.We have opted against it and feel that signing is far superior for him and are thinking about getting him an interpreter for when he starts kindergarten.

We don't have any deaf or HoH family or friends so we have very little knowledge about how to get more involved in the deaf community.And meeting other parents learning to sign here in Utah.

I know this is a site for deaf and HoH people and or their deaf/HoH children.But our situation is unique and I feel we don't really fit in anywhere so I hope it is o.k. to be here and I look forward to getting to know you all.

~~Becky~~
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Becky- I think it's great you are encouraging direct communication rather than relying solely upon technology. My guess is the school district would prefer the technology over an interpreter because it would save them money in the long run. The school is responsible for meeting his unique needs, so even though they may say no at first you should feel confident enough to push back. He has an IEP, correct?

It seems pretty clear to me that he should have an interpreter to facilitate communication between him and his peers/teachers. Is the school district providing him with an educational placement? I think a supplemental device like a Dynavox would be a good supplement for times outside of school when an interpreter isn't present (extracurricular activities for example).

I would strongly encourage you to sign up for ASL classes so that you can continue easily communicating with him.
 
Welcome, Becky. Even though your son doesn't have a hearing loss I think it's great that you are here and working on using sign language as a communication means. You are more than welcome here! Hopefully other parents in similar situations to yours will chip in here too.
 
Welcome! Unfortunatly Utah is VERY oral. Even dhh kids may not get Sign exposure. And yes, kids who use Sign as a first language, although they can hear are very low incidence. (it's common to use Sign in an augmentive and alternative communication sort of way in programs for severe/profound mentally disabled/autistic kids)
There are a handful of schools that have Signing programs for kids who use Sign as a first language due to things like tracheostomies, apraxia etc......
Can you move maybe?
There's St. Rita's: Sign N' Say
Children's Center for Communication (CCC) Programs
I thought TLC (The Learning Center) in MA had one, before its Randoloph program closed a few years ago.....not sure if they still do.
 
CSign said:
He has an IEP, correct?

It seems pretty clear to me that he should have an interpreter to facilitate communication between him and his peers/teachers. Is the school district providing him with an educational placement? I think a supplemental device like a Dynavox would be a good supplement for times outside of school when an interpreter isn't present (extracurricular activities for example).

I would strongly encourage you to sign up for ASL classes so that you can continue easily communicating with him.
Click to expand...

He did have an I.E.P. and is set up basically in a pre-preschool class for 3-4 year old.The teacher is a special ed. teacher so I assumed...she would know some signs....she didn't know a single one neither does her aide.Which was a huge let down.They are trying to learn some signs and I've been patients as it's not a k-12 class and they're trying to adjust but,Paddy only really signs at home.He assumes people out of the home do not sign and he tries really hard to talk which on good days he can clearly say 1 word at a time clearly,never 2 words together and not a full sentence. So it is not really an effective way for him to communicate.

He does have an IPAD with ACC software set up and categories for all his major things such as,foods,animals,clothes,toys,and common wants.But since it's new and he is 3 he is still seeing it as a toy and just strings 20 minute sentence together of "cup cup cup potty blue"etc. covers his ears and runs lol.

He also has a Picture Exchange board that we implemented even before the signing as I have seen great success with them in non-verbal kids and he took to it right away.But as he learned sign he stopped using it at home.And he won't use it at school since he is so keep on accommodating his teachers he opts for trying to vocalize and does a lot of pointing.

I have heard Utah is all about oralist methods which very well be true I don't have the option to move out of state unfortunately so I just have to keep being the best advocate I can be.

As I said before we'd really like to become involved in the deaf community and meet other parents learning a whole new language too.Also we would love for Paddy to have friends that sign like him so he doesn't feel obligated to talk.His only friend that signs is his big sister and she signs everything :)

I just wonder would the deaf community be accepting of us considering we're still learning and matter of factly we aren't hard of hearing.And also Utah is so cliquish amongt Mormon and Non-Mormon people.I have no issues with Mormons at all I just am not one and it is a reality that they kind of stick to their own people.

And as far as signing classes they only ones I've seen are "Baby sign" classes and we are pass that in what we know and have learned.Are there different levels of signing class for more advanced but not super advanced signers?

Thank you guys so much.
 
The dominant culture of Utah and the fact that Utah is very oral are related. You will not encounter rejection among signers.
 
BeckyBoom said:
He did have an I.E.P. and is set up basically in a pre-preschool class for 3-4 year old.The teacher is a special ed. teacher so I assumed...she would know some signs....she didn't know a single one neither does her aide.Which was a huge let down.They are trying to learn some signs and I've been patients as it's not a k-12 class and they're trying to adjust but,Paddy only really signs at home.He assumes people out of the home do not sign and he tries really hard to talk which on good days he can clearly say 1 word at a time clearly,never 2 words together and not a full sentence. So it is not really an effective way for him to communicate.

He does have an IPAD with ACC software set up and categories for all his major things such as,foods,animals,clothes,toys,and common wants.But since it's new and he is 3 he is still seeing it as a toy and just strings 20 minute sentence together of "cup cup cup potty blue"etc. covers his ears and runs lol.

He also has a Picture Exchange board that we implemented even before the signing as I have seen great success with them in non-verbal kids and he took to it right away.But as he learned sign he stopped using it at home.And he won't use it at school since he is so keep on accommodating his teachers he opts for trying to vocalize and does a lot of pointing.

I have heard Utah is all about oralist methods which very well be true I don't have the option to move out of state unfortunately so I just have to keep being the best advocate I can be.

As I said before we'd really like to become involved in the deaf community and meet other parents learning a whole new language too.Also we would love for Paddy to have friends that sign like him so he doesn't feel obligated to talk.His only friend that signs is his big sister and she signs everything :)

I just wonder would the deaf community be accepting of us considering we're still learning and matter of factly we aren't hard of hearing.And also Utah is so cliquish amongt Mormon and Non-Mormon people.I have no issues with Mormons at all I just am not one and it is a reality that they kind of stick to their own people.

And as far as signing classes they only ones I've seen are "Baby sign" classes and we are pass that in what we know and have learned.Are there different levels of signing class for more advanced but not super advanced signers?

Thank you guys so much.
Click to expand...

Do you mean low incidence special ed? Again I have a feeling the problem is that he's low low incidence......it's very rare for someone not to have verbal skills and not have other conditions........It sounds like he's getting a full toolbox with other tools which is good...I would look into Deaf stuff....how far away from SLC are you? There is a signing Deaf School, Jean Massoiu Academy which might be able to help.
 
BeckyBoom said:
I am the proud mother of a 3 year old boy named Patrick or as we call him Paddy.Paddy was born 3 months early but was surprisingly healthy.Once he caught up weight wise he was sent home without incident until 22 months of age.During the middle of the day one day his eye started to droop,and a week later the other.

We were admitted to the Children's for a week and a battery of test.All test came back negative or normal but they diagnosed him and treated him with Myastenia Gravis for the last year or so.Which they recently confirmed he doesn't have.

In the last year the paralysis has spread to his facial muscles he basically can not make facial expressions and had to chew with one side of his face. They did surgery to lift his eyelids but he lost all muscle function in the muscles that control eye movement and they are in a fixed position.During this progression he lost his ability to talk which was later found out to be due to paralysis and muscle fatigue in his mouth, tongue and throat.We still have no diagnosis and no idea if it will progress farther south then his throat at this point.

He isn't hard of hearing but he is unable to speak.We have been diligently teaching him sign language for about the last 8 months and he has picked it up quickly he signs roughly 300-400 signs right now.I have a low functioning Autistic younger brother and have worked in the special ed./non-profit system most of my life and had a decent signing vocabulary but my son is surpassing that faster than me and his dad can keep up and we're struggling to find classes and support groups for parents learning sign.The school has pushed for us to use a touch to speech device to do his talking.We have opted against it and feel that signing is far superior for him and are thinking about getting him an interpreter for when he starts kindergarten.

We don't have any deaf or HoH family or friends so we have very little knowledge about how to get more involved in the deaf community.And meeting other parents learning to sign here in Utah.

I know this is a site for deaf and HoH people and or their deaf/HoH children.But our situation is unique and I feel we don't really fit in anywhere so I hope it is o.k. to be here and I look forward to getting to know you all.

~~Becky~~
Click to expand...




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