Our Story
I am attempting to take previous blog post and melt them together to form one long story about us. So please keep that in mind as you read along.
In 2004 we made the decision to give our daughter the Cochlear Implant. She was old enough to be a part of the decision making, but ultimately it was our decision. This article is not meant to be a debate. I'm not trying to fluff feathers, just relating our experience.
We saw the CI to be a tool. It was meant to give her access to the hearing world, but not to become hearing. Many believe that when she received the CI that she could miraculously hear. So all of a sudden we were faced with people constantly asking if she could hear now and would start talking like the rest of us "hearing' people.
My daughter is deaf! She will always be deaf. That is who she is and she likes being deaf. Only one time in her life has she asked for the doctors to fix her ears, but she has prayed repeatedly for a deaf brother and that her parents would become deaf!
My daughter signs and likes signing, but she also loves to talk! As she matures we ask her opinion on her deafness and education. We want to know what she is thinking and who she is. We were discussing communication options and I simply asked if she liked signing or talking more. She quickly responded with, "I like signing, but some people don't know sign." She listed several people that she is with regularly, mostly family, and then continued: "I want both. Sign and voice. I want to talk with my friends and family." I was very proud of my little girl. She understood that she lives in a hearing world. I have nothing wrong with a person who only signs. They get along just fine in this world through gestures, writing, and interpreters. But MY daughter wants to do both, so we are trying to give her that.
The CI is a wonderful technology, but it is not a quick "fix". When it works, it gives her good sound. She has been able to develop some good speech. She has been without the CI for about 2 months now due to equipment failure. At risk for sounding like a bad mom, I like her without it. She seems calmer without it and it requires all of us to sign to her. Will we get the CI fixed? Yes, of course we will. But it's just nice to know that with or without it, my daughter can still communicate.
To be . . . deaf is a part of who she is.
To not be . . . deaf, we would miss out on a whole other world.
2009 brought us to a new place in the road on educating our deaf child. After lots of prayer we decided to enroll our daughter into deaf school. We have not abandoned homeschooling! Actually this process, although fearful for me, revealed our teaching ability as Shelby was tested to determine her grade level. I told the teacher at what level I guessed she was at so that she would know where to start with the testing. And guess what? I was right on! So that proved that I knew where she was at, so I was an active teacher, but it was also a little embarrassing because she was several grade levels behind. I knew this. We had struggled with reading for years! I just couldn't seem to make progress and felt it was because of our lack of ASL skills. I wasn't able to present the info in her language well. There was just a wall I couldn't break! So we enrolled her in school to get this exposure to ASL, to develop positive deaf role models (which she really never had a problem with this), to meet friends like her, to get speech therapy since she wants to communicate with the hearing world so badly, and to get specialized teaching for reading. Reading is her key to success!
After a month in school her teacher, the speech therapist, the art teacher, the audiologist, the itinerant teacher from the local district, and the ASL teacher all observed her. And I got to meet with them for the verdict. I was a little nervous, but also excited to hear how she was doing. And you know what! Her teacher is having the same problem with her as I was! I also learned that they didn't feel the need to work with her on ASL as she has better ASL skills than most kids her age! She talks in ASL and has trouble turning that into English, obviously. There was concern over her cochlear implant as it has issues. We are still waiting on parts, but there wasn't anything I could do about it. Her teacher said that her ASL is fine, its her processing that is not quite right. So all these years of struggling, came to find out that I had been dong a great job!
Shelby has a loss of myelin sheath in her brain that the docs never could tell me how it would affect her. I spoke to neruodevelopmental specialist summer 2009 and she explained to me how Shelby's brain is functioning. Her brain tires easily because it takes her so much longer to process information. This tiny bit of information helped us understand her a little bit more. Her teachers strongly felt this processing issue is a result of the myelin sheath. She has an issue with time. She doesn't understand tenses. Doesn't grasp next year. She lives in the present (as Diane can testify to that!) And as one of the teachers mentioned, if after 8+ years, she can't remember that snack is always at 3:00pm, then there is something going on there. So they worked on a plan that will give her the concept of time so that she can function as an adult.
So anyway, we were sitting in this meeting and the teacher asked me what her skills and likes were so that she would be able to use that in class. I started listing things like cooking, sewing, knitting, using power tools, horseback riding, etc. Boy were they impressed! They started joking about the transition classes they have available in high school. These classes are designed to teach these kids this stuff so that they can transition into real life. Most of them live in the dorms and rarely see a kitchen. Shelby could probably teach some of these classes! Needless to say they were very impressed with Shelby. But I learned that I wasn't doing a bad job. I don't regret putting her in school, but our goals have changed a little. So now she is in school to get more exposure to ASL, to develop more positive deaf role models, to meet friends like her, to get speech therapy since she wants to communicate with the hearing world so badly, and to get specialized teaching for reading, focusing on her processing issues. Reading is her key to success!
The 2011-2012 school year we brought Shelby back home. She is thriving in the homeschool setting yet again and we have made great leaps and bounds. We are also seeking out further testing on her brain in hopes of helping her succeed!
Now that we are into the 2011-2012 school year we are back into homeschooling and I felt a renewed desire to work on this blog again. So for starters I would like to fill in where we left off.So we put her in deaf school and she was there for her 5th and 6th grade years. Although there were many good things about the situation there were equally as many bad things. I'm not going to get into all that but just needed to say that we decided to bring her home again. I missed being a part of "her world". So we are now living and breathing "Shelby-ville" everyday. But doing that, I have discovered how poorly I sign after two years of not much practice. And I have discovered how little she really understands. She is a great actor! I watch her communicate with her friends on her VP (video phone) and when asked what they were talking about (I know because I was watching) she can't really give me an answer. She acts like she understands and keeps the conversation moving, but really misses a lot! So thus began my determination to make sure she really understands what is going on. And of course she gets angry all the time at my questions. I now follow her to youth group at church and interpret for her. She is accepting it now and actually thankful I am there. And of course I am realizing I really need to brush up on my sign language, because she is suffering at my hand . . . literally. :)
Now in the back of my mind, I have been waiting patiently for the day that she would be able to pick up a book and read and learn. And after years of pushing reading and her diligent practice, she has a larger vocabulary, but still no comprehension. So reading is still not a way she is able to learn thru. I have never treated my daughter like she was handicapped. If she wanted to do something, we found a way for her to do it. She wanted to walk and run, so we watched as she did just that at a normal age. She wanted to draw and write, so we gave her pencils and she was able to hold a pencil correctly and write her name at the age of 2. She loved animals, so we introduced her to horses and bought her a special saddle to fit her little legs. She was riding at the age of 4 and moved on to participate in church rodeos, 4-H horse shows, and Isaiah's Place Equestrian Drill team. She loves music and has an amazing natural beat. She plays the piano beautifully and is now learning the violin. She loves books and we make plenty available to her. She loves to write and has copied large portions of the Bible for many years. She loves to be in the kitchen and can cook a wonderful meal for our family from scratch, from memory. She is diligently trying to learn to read cookbooks. Her love of animals brought her to show a pygmy goat this year at county fair and she has learned how to milk the big goats this year too. She is an amazing kid!
All that to say, that I've always expected her to do great things. And in that list of great things is read! We just celebrated her 13th brithday and she still just can't get above a 2nd grade level. Now like most deaf, there are underlying health issues. And this varies wide across the spectrum of health issues. Short Stuff is missing her myelin sheath (or her white matter) and the docs are not quite sure how that will affect her learning. But we are discovering that it really slows down her ability to process information. Action learning she is great at, bookwork - not so much. So how has this child learned to read thus far? Basically she repeats a word over and over again until it passes into her gray matter and sticks. She is the most diligent worker I have ever met! So vocabulary she is getting, how a sentence goes together is a whole other matter!
Ok, moving on to where all this has brought me. I was listening to a CD yesterday about being a daughter of dignity. And the whole time that I am listening to it, I'm thinking, "Wow, I wish Short Stuff could listen to this!" So that gets me to thinking. We have some really good Bible stories in ASL, we even have the Bible in ASL, and there are sermons online in ASL. But where is the stuff in the middle? For teenagers? Now my signing really stinks. But I am really wanting to get some of these great CD's translated for Short Stuff. And I figured while I am at it, why not make them available to other teens? I'm not sure how I am going to go about doing this. I know I need to get permission from the people who presented the CD's first. I also will need help with videorecording, interpreting, glossing, spreading the word, etc. So if this is something that interests you or if you know more than I do, please let me know.
In 2004 we made the decision to give our daughter the Cochlear Implant. She was old enough to be a part of the decision making, but ultimately it was our decision. This article is not meant to be a debate. I'm not trying to fluff feathers, just relating our experience.
We saw the CI to be a tool. It was meant to give her access to the hearing world, but not to become hearing. Many believe that when she received the CI that she could miraculously hear. So all of a sudden we were faced with people constantly asking if she could hear now and would start talking like the rest of us "hearing' people.
My daughter is deaf! She will always be deaf. That is who she is and she likes being deaf. Only one time in her life has she asked for the doctors to fix her ears, but she has prayed repeatedly for a deaf brother and that her parents would become deaf!
My daughter signs and likes signing, but she also loves to talk! As she matures we ask her opinion on her deafness and education. We want to know what she is thinking and who she is. We were discussing communication options and I simply asked if she liked signing or talking more. She quickly responded with, "I like signing, but some people don't know sign." She listed several people that she is with regularly, mostly family, and then continued: "I want both. Sign and voice. I want to talk with my friends and family." I was very proud of my little girl. She understood that she lives in a hearing world. I have nothing wrong with a person who only signs. They get along just fine in this world through gestures, writing, and interpreters. But MY daughter wants to do both, so we are trying to give her that.
The CI is a wonderful technology, but it is not a quick "fix". When it works, it gives her good sound. She has been able to develop some good speech. She has been without the CI for about 2 months now due to equipment failure. At risk for sounding like a bad mom, I like her without it. She seems calmer without it and it requires all of us to sign to her. Will we get the CI fixed? Yes, of course we will. But it's just nice to know that with or without it, my daughter can still communicate.
To be . . . deaf is a part of who she is.
To not be . . . deaf, we would miss out on a whole other world.
2009 brought us to a new place in the road on educating our deaf child. After lots of prayer we decided to enroll our daughter into deaf school. We have not abandoned homeschooling! Actually this process, although fearful for me, revealed our teaching ability as Shelby was tested to determine her grade level. I told the teacher at what level I guessed she was at so that she would know where to start with the testing. And guess what? I was right on! So that proved that I knew where she was at, so I was an active teacher, but it was also a little embarrassing because she was several grade levels behind. I knew this. We had struggled with reading for years! I just couldn't seem to make progress and felt it was because of our lack of ASL skills. I wasn't able to present the info in her language well. There was just a wall I couldn't break! So we enrolled her in school to get this exposure to ASL, to develop positive deaf role models (which she really never had a problem with this), to meet friends like her, to get speech therapy since she wants to communicate with the hearing world so badly, and to get specialized teaching for reading. Reading is her key to success!
After a month in school her teacher, the speech therapist, the art teacher, the audiologist, the itinerant teacher from the local district, and the ASL teacher all observed her. And I got to meet with them for the verdict. I was a little nervous, but also excited to hear how she was doing. And you know what! Her teacher is having the same problem with her as I was! I also learned that they didn't feel the need to work with her on ASL as she has better ASL skills than most kids her age! She talks in ASL and has trouble turning that into English, obviously. There was concern over her cochlear implant as it has issues. We are still waiting on parts, but there wasn't anything I could do about it. Her teacher said that her ASL is fine, its her processing that is not quite right. So all these years of struggling, came to find out that I had been dong a great job!
Shelby has a loss of myelin sheath in her brain that the docs never could tell me how it would affect her. I spoke to neruodevelopmental specialist summer 2009 and she explained to me how Shelby's brain is functioning. Her brain tires easily because it takes her so much longer to process information. This tiny bit of information helped us understand her a little bit more. Her teachers strongly felt this processing issue is a result of the myelin sheath. She has an issue with time. She doesn't understand tenses. Doesn't grasp next year. She lives in the present (as Diane can testify to that!) And as one of the teachers mentioned, if after 8+ years, she can't remember that snack is always at 3:00pm, then there is something going on there. So they worked on a plan that will give her the concept of time so that she can function as an adult.
So anyway, we were sitting in this meeting and the teacher asked me what her skills and likes were so that she would be able to use that in class. I started listing things like cooking, sewing, knitting, using power tools, horseback riding, etc. Boy were they impressed! They started joking about the transition classes they have available in high school. These classes are designed to teach these kids this stuff so that they can transition into real life. Most of them live in the dorms and rarely see a kitchen. Shelby could probably teach some of these classes! Needless to say they were very impressed with Shelby. But I learned that I wasn't doing a bad job. I don't regret putting her in school, but our goals have changed a little. So now she is in school to get more exposure to ASL, to develop more positive deaf role models, to meet friends like her, to get speech therapy since she wants to communicate with the hearing world so badly, and to get specialized teaching for reading, focusing on her processing issues. Reading is her key to success!
The 2011-2012 school year we brought Shelby back home. She is thriving in the homeschool setting yet again and we have made great leaps and bounds. We are also seeking out further testing on her brain in hopes of helping her succeed!
Now that we are into the 2011-2012 school year we are back into homeschooling and I felt a renewed desire to work on this blog again. So for starters I would like to fill in where we left off.So we put her in deaf school and she was there for her 5th and 6th grade years. Although there were many good things about the situation there were equally as many bad things. I'm not going to get into all that but just needed to say that we decided to bring her home again. I missed being a part of "her world". So we are now living and breathing "Shelby-ville" everyday. But doing that, I have discovered how poorly I sign after two years of not much practice. And I have discovered how little she really understands. She is a great actor! I watch her communicate with her friends on her VP (video phone) and when asked what they were talking about (I know because I was watching) she can't really give me an answer. She acts like she understands and keeps the conversation moving, but really misses a lot! So thus began my determination to make sure she really understands what is going on. And of course she gets angry all the time at my questions. I now follow her to youth group at church and interpret for her. She is accepting it now and actually thankful I am there. And of course I am realizing I really need to brush up on my sign language, because she is suffering at my hand . . . literally. :)
Now in the back of my mind, I have been waiting patiently for the day that she would be able to pick up a book and read and learn. And after years of pushing reading and her diligent practice, she has a larger vocabulary, but still no comprehension. So reading is still not a way she is able to learn thru. I have never treated my daughter like she was handicapped. If she wanted to do something, we found a way for her to do it. She wanted to walk and run, so we watched as she did just that at a normal age. She wanted to draw and write, so we gave her pencils and she was able to hold a pencil correctly and write her name at the age of 2. She loved animals, so we introduced her to horses and bought her a special saddle to fit her little legs. She was riding at the age of 4 and moved on to participate in church rodeos, 4-H horse shows, and Isaiah's Place Equestrian Drill team. She loves music and has an amazing natural beat. She plays the piano beautifully and is now learning the violin. She loves books and we make plenty available to her. She loves to write and has copied large portions of the Bible for many years. She loves to be in the kitchen and can cook a wonderful meal for our family from scratch, from memory. She is diligently trying to learn to read cookbooks. Her love of animals brought her to show a pygmy goat this year at county fair and she has learned how to milk the big goats this year too. She is an amazing kid!
All that to say, that I've always expected her to do great things. And in that list of great things is read! We just celebrated her 13th brithday and she still just can't get above a 2nd grade level. Now like most deaf, there are underlying health issues. And this varies wide across the spectrum of health issues. Short Stuff is missing her myelin sheath (or her white matter) and the docs are not quite sure how that will affect her learning. But we are discovering that it really slows down her ability to process information. Action learning she is great at, bookwork - not so much. So how has this child learned to read thus far? Basically she repeats a word over and over again until it passes into her gray matter and sticks. She is the most diligent worker I have ever met! So vocabulary she is getting, how a sentence goes together is a whole other matter!
Ok, moving on to where all this has brought me. I was listening to a CD yesterday about being a daughter of dignity. And the whole time that I am listening to it, I'm thinking, "Wow, I wish Short Stuff could listen to this!" So that gets me to thinking. We have some really good Bible stories in ASL, we even have the Bible in ASL, and there are sermons online in ASL. But where is the stuff in the middle? For teenagers? Now my signing really stinks. But I am really wanting to get some of these great CD's translated for Short Stuff. And I figured while I am at it, why not make them available to other teens? I'm not sure how I am going to go about doing this. I know I need to get permission from the people who presented the CD's first. I also will need help with videorecording, interpreting, glossing, spreading the word, etc. So if this is something that interests you or if you know more than I do, please let me know.