And we are back!

I kind of abandoned this blog when we put Short Stuff into the state deaf school here. But 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 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 work 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.

My Versatile Daughter

This year has 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!

She has been in school for a month now. Over the past month 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 this week 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 this summer 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 feel 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 are working 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!

Bible Stories

One of the most important duties of a parent is to pass on our spiritual beliefs to our children. I want my children to love God with all their hearts. So how do we pass this on to our deaf children that miss out on so much verbage?

1. They are very good at asorbing information visually, so what are we telling them visually? Do they see us worshipping? Do they see us love and cherish them? Do they see us helping those in need? Do they see us honoring our authorities? My deaf daughter is the best at mimicing me and, sadly, she picks up on all my sinful habits. We need to be sure we do what we say!

2. A Bible notebook has been a fabulous idea at our house. Each of my children keep a Bible journal which we work on each morning after Breakfast. The younger ones draw pictures of whatever Bible story they are reading and copy a sentence from their Bible story books. My deaf daughter has been copying scripture for several years now. She doesn't know all that she is writing, but she is definately getting familiar with Bible reference.

3. We also enjoy acting, signing, and retelling of Bible stories. I get the video camera out and they enjoy acting out their favorite stories. Sometimes I read and sign a story - or sometimes I only sign the story. They all get a kick out of that.

4. We also take advantage of Bible coloring books. No Greater Joy has a new series of very detailed Bible coloring books that my kids have enjoyed. They also have a corresponding comic book Bible.

5. And my favorite is Deaf Missions Bible DVD's. They offer the whole Bible in ASL on DVD!! They have kids videos and a kids Bible study club! All awesome!

To be or not to be . . .

Five years ago 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.

Using an Interpreter

Our daughter had her first experience with a professional interpreter. What an experience! We never go anywhere demanding more than "mom" as the interpreter. And we love all the volunteer interpreters at IP, but I've never had to request an interpreter for an event. Well . . . this summer all three of my children earned a free Ringling Brothers Circus ticket by reading 5 books. This was a really big deal for us! So I planned ahead and called the event center's office a month early, actually my husband called while I was in labor! It was so easy! They gave us no hassle and set it up within the week. We were all very excited, especially me! I didn't have to sign or answer questions during the show. The interpreter was awesome and Shelby loved it. She actually watched the interpreter for the two hours we were there! She tired a little at the end, but did great! She felt so special. I wanted to share this little story for those out there that might be a little unsure about requesting an interpreter. I've always been hesitant to ask when I know that I could do the job. But I also realize that my daughter needs to learn how use an interpreter, she needs to know that they are available for her. She even told the interpreter that her "mommy can't sign because she has to feed the baby." Wow! She really understands whats going on. She realized that I can't always do that for her.

Silent Summer Camp 06

* Originally Posted June 13, 2006

We just got back from Silent Summer Camp in Fort Worth, Texas. I got to be a counselor and Shelby was a camper. Our goal for the camp was to expose both of us to ASL and to use it. It is the best way to learn and practice any language. We definately got to do that this past week!

It took me the first few days to figure out what the kids were saying. I'm so used to signing and talking together that when we were just using ASL I got lost. It was a really good experience for me. By the end of the week, though, I felt I could communicate easier and not so frustrated.

We got to go horseback riding, fishing and canoeing at the YMCA camp, Fort Worth Zoo, Six Flags, Science Museum and OMNI theater, and swimming. We had a really good time. It was well planned out and lots of fun.

We made some new friends that I hope Shelby will be able to see again. I also made friends that I hope to stay in touch with. My favorite part of the whole week was seeing the kids use the language. I found it really cool. Can't think of another word to describe it.

I also got to see Shelby change how she signed. The beginning of the week she mostly hung out with the adults and used more voice than sign until she figured out that everyone knew how to sign and she didn't need to voice here. Slowly she started to mingle with the kids and stopped voicing. They called her "Bossy" because she told everyone what to do regardless of the fact that she was only 3' tall. Which also gained her the nickname "Bulldog" so lovingly given to her by the paramedic.

We really had a good time and I am going to miss it next year since we will no longer be in Texas.

Thanks Stephanie for a great week!

Shelby's Frustrations

* Originally Posted July 17, 2006

Being the only deaf member of our family . . . being the only dwarf member of our family . . . and being the only athletic member of our family Shelby gets quite frustrated at times. Which in turn makes me, Mommy, frustrated. I want to use this blog page to inspire other parents of deaf children to homeschool, but I don't want to paint a picture full of roses. Life is hard sometimes and we forget why we are doing this!

My husband and I often compare our lives to having a child in our house that speaks Spanish. We live in Texas so we know some Spanish, but not at all fluent - not even close for that matter. Many families, unfortuantely, live the same situation but don't have the added challenge of trying to educate their child. Unfortunately they chose to let the state educate their child, yet never learn their child's natural language. This creates a false family with the child's peers instead of their family. We have chosen the bumpier path - the more rewarding path - the path laid out for us by our Lord and Savior.

There are days that I look at my daughter and wish she was born with normal hearing, I wish she could speak to me and tell me all about her dreams, I wish she didn't need me to translate to her what her daddy is trying to tell her. But then I think about what blessing God gave me when he gave me a deaf daughter. Instead of hearing my daughter tell me her dreams I get to see her dreams in full animation! (deaf people have such a wonderful gift for animation) Instead of fussing about translating I'm getting the opportunity to teach my husband and others sign language and time to practice my signing skills! If God hadn't blessed me with Shelby I may never have discovered a wonderful culture and language, I may never have homeschooled, I may never have appreciated each child's gifts and uniqueness, I may never have developed a heart for the deaf community.

Our family is not perfect and we are still learning. It's not alwasy easy, but it's always worth it! I hope that God will allow me to continue to encourage and empower other parents to take an active role in their deaf child's life.

Life with no sound

* Originally posted November 19, 2006

Shelby has been experiencing life without sound for the last few months. After chosing to give her speech processor a bath, it wasn't working very well. Our audiologist replaced the processor for us, but was unable to cover the broken coil. We haven't had the money to replace this part as of yet, so Shelby has had no sound.

As much as I would like Shelby to have sound, it is not a bad thing that she has been without either. Her signing skills have improved greatly and so have ours. She is learning what it means to be deaf. We do plan on getting her up and running again so that she will have that tool available to her, but it has been an interesting and challenging time for us.

So for our family, we appreciate that Shelby is deaf and glad that she is ok with that. We are also thankful that she has the capability of a cochlear implant and understands that it is a tool to help her and not something to depend on.

Teaching reading has taking on a new challenge without any sound. She tries very hard and is very motivated to read. She uses a lot of lip reading. In January we will be starting a new curriculum created for deaf children. I will be sharing how that works.