Building a Language
My first response before I even knew the degree of SJ’s hearing loss was to learn American Sign Language and teach it to her. I never thought it would be be easy, but my original expectations might have been a little unrealistic.
I was already familiar with baby sign language. I figured that if babies can learn to sign before they can talk then this sign language thing should be a breeze, especially for SJ because she’s brilliant! Come to find out it’s not that simple and it has to do with what I wrote about last week in “the Science of Language”. You acquire your first language by being immersed in it and it all happens easily and naturally. It’s called first language acquisition.
Babies hear MILLIONS of words before they ever say their first! They are observing, listening and mentally taking it all in for the first year or so. It’s a critical time developmentally. A deaf baby born in a deaf family is going through the same process except with a manual language. These children are typically raised in deaf culture so they see sign language happening all around them through their parents, teachers, and communities. One of SJ’s therapist says a child needs to see a sign around 100 times before it sticks. I thought I would simply show SJ some signs and teach her how to talk, but I am up against her natural urge of language acquisition which is to imitate, and for the past 2 and a half years she hasn’t seen any proof that the world around her communicates through sign language. Even now, I try to sign quite a bit, but we are still no where near the amount of oral words she would be hearing if she could. I’m not sure if I am making sense, but this whole first language acquisition thing was a recent epiphany for me. I just never thought about it that way.
Realizing your child is at square one trapped in world without language is a tough pill to swallow. It’s different than realizing that they can’t hear, it’s like Okay. Wow, we have a lot of lost time to make up. I explain it to people using Z as an example. Z started watching signing time and learning ASL along with us just a few months ago. As a 4 year old he quickly picked up around 100 words with minimal effort. I can ask Z What is the sign for share? and he’ll show me. The difference between him and SJ (besides that Z is 2 1/2 years older) is that Z already has a language. He knows what share means and has been learning about this word for years, now he is just attaching a sign to it. Just because SJ is deaf it doesn’t mean she is naturally more inclined to pick up sign language, it’s going to be harder for her because of the lack of immersion that I mentioned earlier. Anyway, that was my light bulb moment last month, but taking all this into consideration she is doing awesome. Sometimes I take for granted how much she does communicate with us through ASL. I need to document more of those precious first words that we are seeing from her.
On another note, we got the test results back yesterday and praise the Lord SJ’s brain and ear anatomy looks great. This means the hearing loss is not caused by any shocking unforeseen damage or malformations. That is really good news and now we can move forward with getting a cochlear implant, which is another big ol’ topic that I need to write about sometime. Just another curve on this windy hilly journey that we are on. There are ups and downs, pit stops, and speed bumps, but I am trying to take in all the beautiful scenery along the way and I wouldn’t trade it for anything.
4 Year Old Funnies
PS- In that last photo of Z he is on a dock looking down at the fish. Every time he bent over you would see Woody from Toy Story peeking over staring at you. That was before Z owned a belt.
The Science of LANGUAGE
Despite the typos and sloppy grammar you may find on this blog I always excelled at Language Arts in school, but that had to do with writing. I never even considered delving into linguistics. I had a hard enough time getting through my second year of Spanish. However, now having a daughter that is deaf and therefor cannot speak, I am learning all kinds of fascinating facts about language. I’m learning about the intricate art and science of language, and how every one of us communicating in whatever form we learned naturally, is an absolute miracle!
I watched a National Geographic documentary earlier this year called The Science of Babies before I knew of SJ’s hearing loss. It touched on the fact that babies are born being able to produce and hear all sounds alike. An American newborn is processing Chinese just as well they are English, but since they will hear English the most they will start to perceive it as their native language very early on. Eventually they will learn to understand English and speak English and have an accent. Understanding and putting together all of these different speech sounds is called phonological development. The English language has about 44 phonemes, out the potential 150 phonemes used in languages throughout the world.
The thing that I am discovering in my most recent research of hearing/language and our amazing minds is that you have to “use it or loose it”. As an infant you had the potential to roll your R’s along with the best mariachi singer in Mexico, but there are many people whose language doesn’t include this sound and therefore they can’t roll their R’s at all (my husband is one of those people). Did you know that most Germans can’t pronounce squirrel? It all has to do with something called phonemic awareness. Our pastor was preaching from the book of Judges chapter 12 recently. He described when the Ephraimites where trying to escape over the Jordan after battle. The Gileadites had secured the river fords to try and stop them. For every soldier trying to cross they would ask them to say the Shibboleth, because they knew the Ephraimites wouldn’t be able to pronounce it. The Ephraimites would then say Sibboleth and were therefor exposed as refugees trying to escape. There you have it. Even way back in the Old Testament, you can find a perfect example of how our brains naturally use and dismiss certain phenomes according to our dialect as we develop language.
If you don’t use it, you loose it. All of this information is not only intriguing, but it is also very important to me because of SJ’s hearing loss. SJ can hear vowels and so that is what she identifies as language. Her brain is currently wiring her to determine what she should “use” and everything else she will “loose”. She is at a very critical age where we either decide that oral communication is not important for her, or we can try to take advantage of the modern technology that will enable her to hear speech before it’s basically too late. We are currently making use of hearing aids, but they can only amplify sound and with her profound loss this isn’t really enough. That is why, by recommendation of her doctors and therapists, we are pursuing the cochlear implant. It’s not the same as perfect natural hearing, but it will create sound rather than just amplify it and allow her to hear and communicate orally.
One of the articles I was given in regards to “Why Early Audition Is Important” (that was the name of the article) talks about how we process sound and why the ages of 0-5 are so critical. Reading it enlightened me to a whole new level of understanding something that I’ve always just taken for granted and that is the development of our natural senses and how they all works. I am going to quote a lot of what I read from this article published in Volta Voices in June 2011because if I paraphrase too much it will probably not be as informative.
“The human brain has a genetic predisposition to want to make sense of the world. This condition of forcing neurons to compete with each other to be selected for “hard wiring” is a necessary biological action that allows the individual to develop the skills necessary to be successful in his or her environment”. Being able to say squirrel is not essential to Germans being successful in their environment, but for Americans it’s part of our language, on the other hand I don’t even want to know what I would sound like trying to speak German or an African clicking language. Moving on, “A fully developed brain has over 100 trillion connections (pruned down from the quadrillions of connections in the 2-year old brain), and there are only 80,000 genes. We use our genes for lots of thing (like neurogenesis and migration) There just aren’t enough for synaptogenesis too. Children during the first two years of life create an overabundance of synaptic connections, which continues until around age 8 as they learn new skills and behaviors. These connections are forced to compete for survival and are either pruned away or cemented based on the amount of electrical activity that occurs at that connection.” WOW! Okay, so as much as I like to talk about neural pathways and all, let me tell you how I translate this. If your brain is a honey comb and it has 100 worker bees they all have to find a job to do fast. They will find work somewhere, but if there is no work in one place then they will move on and take their business elsewhere. That is why it really is true that blind people have heightened senses in other areas, and yes deaf people do tend to have better peripheral vision and sense of vibration etc. All of this pruning and cementing that is going on happens early in life which is why it is so critical to get SJ the resources that she needs as soon as possible. Even though it is a time sensitive issue it’s also good to know that she is well within the right age range for all of this. We can be confident that it is not too late for her to start stimulating that auditory nerve and we are working toward that pretty much every single day.
I am not an expert in all of this, but I love reading and trying to understand as much as possible. To me it puts a whole new spin on education and foreign language. Some of the resources that I have read came from an online article about how children learn language, which prompted me to learn more about phonological development on good old Wikipedia, and of course I already referenced some of the other articles that I read and I’ve included the links for those as well. There is more to all of this and how it directly applies to SJ and her communication abilities, but basically that is the brainy science side of things. In short, use it or lose it!
2012 Garden Timeline
Thanks to J and the Kentucky soil for making this summers garden such a success.
The Final Trimester
Test Day
She also had an MRI and CAT scan, but we won’t know any results for these tests for a couple more weeks. All three tests were done while SJ was sedated, but it was a light anesthesia and she handled it really well. She had to fast for about 15 hours total and then she was allowed some juice, followed by soft foods, and eventually solids.
It’s a different situation, but similar enough that I feel like I have some insight. In fact, it’s similar enough that my mom can relate to my situation. She knows what it is like to suddenly become an expert on a medical condition that you had no previous experience with. Or to be overwhelmed with Doctors, tests, and appointments while caring for the rest of your family. She also knows how it feels to suddenly drop everything to nurture a child that has special needs, to fight for them, and make major decisions on their behalf.
What This Means (3 months later)
A little over 3 months ago I did a blog post titled “What This Means (as far as I know)” and in it I tried my best to describe what was going on with SJ’s newly diagnosed hearing loss. At the time I admitted to feeling that I was underqualified to explain or understand what was really happening with her. I still feel that way, but we have made some progress in treatment, diagnosis, and overall adjustment. So here is an update of the 10 questions I had previously outlined.
1. What type of hearing loss does SJ have?
Sensorineural, meaning inner ear.
2. How did this happen?
We still don’t know. We may never know, but I have started asking her doctors about genetic testing. I have recently met multiple parents whose children were deaf as a result of a hereditary hearing loss called Connexin 26. I could be totally wrong in my attempts to search for answers, but Cx26 is is the most common cause of congenital sensorineural hearing loss and some of the stories I have heard that involve this type of hearing loss sound very similar to SJ’s. I won’t go into all the details, but I’ve included some links for those interested.
3. Was she born with it? We still don’t know for sure. My latest theory is that she was born with some hearing loss, but that it wasn’t so severe. That may be why she had definite signs of hearing before her 2nd birthday and has progressively gotten worse. It’s a shot in the dark, but it’s all I’ve got for now.
4. Could she continue to loose her hearing?
We don’t know, but long story short it won’t matter if she does because her hearing loss is so severe.
5. Is SJ deaf?
YES. 3 months ago my answer was that she is hard of hearing, but since then I have learned from her specialists that SJ is in fact deaf. This doesn’t mean she has no hearing at all, but it means that she has a profound hearing loss.
6. Will she learn sign language or talk?
Right now SJ is unable to hear speech and therefor she can’t talk. We have confidence that with the right equipment she will be able to and we are working on figuring out what is best for our family with great urgency. As it stands, SJ only knows sign language and even that is very minimal because it’s new to her and all of us. For now though, this is how she can communicate and it is her first language.
7. What can she hear?
Someone at the deaf school showed me this video and it gives a good illustration of hearing loss. SJ is severe to profound, so even the final setting in the video is better than what she can hear.
8. What about cochlear implant?
It’s amazing how much can change in 4 months. I was originally hoping we would never have to face the decision for SJ to have surgery. At our first appointment with the audiologist they didn’t even want to discuss the cochlear implant, which I think is just standard protocol- start with hearing aids then take it from there. However, now her entire medical team is recommending the surgery and we are currently in the process of looking at models, choosing a surgeon, and deciding on when to do it. There is a lot more to discuss about this huge life altering decision, but that’s basically where we are at right now.
9. What happens next?
Tomorrow SJ will be sedated and tested for the ABR, MRI, and CTscan. This will be her second ABR which is the hearing test and that will either confirm what we already knew about her hearing loss or potentially see if it has worsened. The MRI will check any brain or nerve damage, which none of her team of experts are worried about because her vision, balance, and all of her motor skills are great. The cat scan will look at the bone structure and give a better picture of what is happening in the inner ear. The results will be in after about 2 weeks.
10. What do we need?
I’ve made a few connections from the deaf school, which is so wonderful, but if you or someone you are close to is deaf, or has a cochlear implant then I would love to hear from you. I am always wanting to learn more and people with personal experience are one of my greatest resources.
You can reach me through my facebook page or email natobusch at yahoo (hopefully, I typed that in way that is spam proof).
Of course we will take all the pray we can get too. Prayers that SJ will be safe during the sedation and that the doctors will get all of the information that they need during these tests. Prayers for guidance on which hospital to use for the surgery if she gets it and even what this means as far as where and when our family will move!
Thank you all for being so loving and supportive. We will of course keep you posted every step of the way.
His First Day
What a milestone! Z started school yesterday. In Texas, or at least where I lived, his birthday is just after the cut off and he was scheduled to start kindergarten next year, but in Kentucky he is supposed to start this year. Enrolling my child in school for the next 13 years was a decision I didn’t want to feel rushed into or have Z unprepared for. So we decided to hold him back and stick with our original schedule, which I was told a lot parents do and it’s perfectly acceptable.
Z has never been to any type of daycare or nursery school. His first 4 years were spent at home with me just learning about life in a relaxed environment. That is why I am taking this Pre-k business very seriously. I treated yesterday as the monumental day he began his long journey of formal education. Maybe that is why I cried just a tiny little bit on the way there.
On Z’s first day of school I woke up earlier than I ever do, ironed his clothes, shoveled down some pancakes, fretted over whether I was sending him with enough food for lunch, and frantically looked for his back pack wondering why I hadn’t done all of this the day before. J and I managed to get both kids out the door and with shortness of breath I began snapping pictures rapidly. I threw any of my professional photographic training out the window. I was in the candid, crazy mom mode. The mom that kept the camera around her neck all morning and literally followed her kids into the school taking pictures all along the way.
There was a moment though that the craziness subsided. 
When I picked him up that afternoon they said he did a great job. Z showed me a map in the hallway on the way out. He loves geography. He held my hand as we headed to the car and I think he walked a little taller that day. I think I did too.
YUCK!
Z and J sharing a shake at Twisted Root and SJ super relaxed with me across the table.
I’m not sure when I will be able to pop in for another update. Starting tomorrow our week is P-A-C–K-E-D. Do you want to hear our schedule? I know, it’s all very intriguing. Tomorrow is the big day for my brother in law and his fiance’. Jeremy will be officiating the wedding and I am doing the photography. Then we will be turning around to make the long haul back to Kentucky just in time for SJ’s therapy on Monday. Tuesday is a really exciting day because Z starts Pre-K and I will have all kinds of details and pictures for that along with updates about SJ’s new deaf and oral school which she will also go to on Tuesday. Thursday is my next prenatal check up which are now scheduled more frequently since I am 31 weeks! Then finally, on Friday we have a really big appointment for SJ where she will be under anesthesia for the first time and they will be testing her for ABR, cat scan, and MRI which will take nearly all day. So, there is a lot going on which is really nothing new. Anyway, it’s good to have my web presence back and all of that nasty filth off of my page. The REAL messy mom lives on!







































