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~~
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~~