2 Years

Reaching this time of year, I began to think back to two years ago as we were in the middle of having our whole lives change all around us. In September of 2008, our beautiful daughter, Eliza, was born. While in the hospital, we found out she failed her newborn hearing screening, and we were totally shocked. This led to questions about Johnny, who was almost two and not saying a word. By December of that same year it was confirmed that both Johnny and Eliza had progressive, permanent hearing loss due to enlarged vestibular aqueducts. I remember how strange it all felt at the time, and how lost we felt as parents. We never imagined having to deal with such a tragedy!
Two years later, having two deaf kids is just the norm. We have since had a third child, who is hearing. Now that's strange for us. I remember feeling heartbroken for my kids, thinking about all the things they would miss out on. Now, I look at my kids and am amazed at how wonderful they are. I don't think they miss out on anything.
It's been a crazy journey for us. When the possibility first arose that our kids might be deaf or hard of hearing, we started learning a few signs, and teaching them to Johnny. We looked at ASL as a way to temporarily communicate with him until he got hearing aids or a cochlear implant. We were sold on the ideas from doctors that despite being deaf, our kids could still have a normal happy life. We continued to use sign with Johnny as we waited four months while he tried the hearing aids before he could get a cochlear implant (this was shortened from six). Then we took him in to have the procedure done. He was so tough and handled it all so well. After a month, we went in for the magical day called " Hearing Birthday" (we don't remember the exact date anymore), when they activated the processor and our son would hear for the first time. A funny thing happened. He heard, and he didn't really seem to care one or the other. He was still the same old Johnny. We worked with him on his speech and listening skills, went in regularly to get his mapping done, and went at least once a week to therapy. Johnny continued to be Johnny, and continued not talking. Our parents kept waiting and wondering when he was going to start saying his first words, but they never really came. However, he was soaking up new signs like a sponge. His whole world was open to him now, in a way he could understand, and a way he loved. A funny thing happened as we went to pre-schools, trying to decide which was right for him. He sat in the oral pre-school and just stared as the teacher spoke to the other kids. He then got up and went over to the toys and decided he was done with that class. We took him to the TC class (no longer offered), the class we were leaning toward, and it was similar to the oral class. Then we took him to the signing class. He came alive. I remember they were learning about apples. The teacher read a book about apples, then they went over to a table where they had some apple peelers and peeled some apples. Johnny was totally engaged. We stayed in that class for over an hour. I think it was then that we realized, as much as we thought we were making a decision for the rest of Johnny's life, he had already made it for us. He had already chosen the visual path for himself. He still loves his school. He comes home everyday ready to go back.
Eliza has been a different experience. She signs. Last time Erica counted, she uses over 200 signs. Not bad for a 2 year old. But she also says a few words,and responds to sound. Her hearing hasn't dropped as much as Johnny's yet, so her hearing aids still do quite a bit of good. I think, as Eliza continues to grow in both the hearing world and the deaf world, she will continue to grow in both languages. She is a talker, and she will talk in any language to anyone who will listen. She wakes up in the morning, and the first thing she does is bring us her hearing aids and wants them in. Totally different from Johnny. But just as great and wonderful.
I suppose having two deaf kids in our family has been a huge blessing for us. One thing that we have learned is to value that everyone is different. What works for our son may not work for our daughter, let alone someone else's child. The other thing that we have learned, probably in conjunction with the first thing, is that the child really does know sometimes what they want, and how important it is to follow their lead. We thought we knew what we wanted for Johnny, but he showed us what he wanted. I am grateful for my wife, who was smart enough to be paying attention.
I remember two years ago venturing out into the Deaf community. It was scary. My wife went to the first few activities without me. She was nervous. I was nervous the first time I went. We had heard from the medical professionals about how closed off the Deaf community was. How if we chose signing, our kids would grow up in a different world from us, and we would never be close. I am so grateful that despite these warnings we did venture out into the Deaf world. Some of the best people I know, I met at these activities. Meeting some of these people gave us the courage to follow Johnny's lead, to know that if he did choose ASL as his primary language, he would turn out just fine. He could still be normal.
Where does this leave us now? We are not giving up on Johnny's CI. We have an appointment set up for a different audiologist next week. This has been something we have been considering lately, something we have not been opposed to, but something we needed to decide on our own. I think we view his CI, and maybe CI's in general, not as a cure, but a tool for communication. I think that for Johnny, learning spoken english will still be an important skill for him, but ASL will always be his primary, first language. I think Eliza will have a little easier time with spoken english, but ASL will still be her primary language. I think their signing has become a part of who they are. They have made it part of their identity.
More importantly, I am looking forward to the next two years, and the two years after that and so on, and for all the surprises that will come our way.

Response to a Blog Post

I recently read a blog post written by a blogger in my local community. In this post, she was posing a question about a girl she knew of with a CI who started attending a "voice off" signing school program when she was three. This girl was 18 months old when she was implanted, and primarily signs at home. According to this blogger, she knows 75-100 kids who have CI's, and in her "expert" opinion, this girl was the only implanted at a young age who cannot understand spoken language. So she poses the question: Does she primarily sign because she cannot understand spoken language, or does she not understand spoken language because she primarily signs? Reading the post,and the comments afterword, it was clear that she felt it was the latter. I read that post last night. Shortly after that, she read my wife's post, "life Doesn't Get Much Better Than This" (link can be found on my blog). In her comment she mentioned that my son, and this one girl are the only children she knew of who were implanted who could not understand spoken language, and then again pointed out our short comings as parents because we will not go up to Logan for our mapping. She then said that every child should respond well to a CI unless they have some other disability. Well I want to clear a few things up for her, and anyone else who might be interested.
The first thing I want to clear up is that neither of my children have a disability or multiple disabilities that would prevent them from learning spoken language. Being deaf is not a disability. They can do anything that anyone else can do, and I won't let anyone say they are handicapped or disabled, including such a fine expert as this blogger obviously is.
Another thing I want to clear up is her point about knowing 75-100 CI kids. I believe this to be true. I would be curious to know how she knows these kids though. My guess would be that she has met many of them from her AG Bell meetings or the likes. Most of the kids whose parents are involved in AG Bell meetings would most likely be primarily Auditory/Oral kids. It just stands to reason. I wonder how many kids with CI's she doesn't know who primarily sign, and she doesn't know them because chances are, they and their parents don't go to the AG Bell meetings (I personally have never been to one). It would stand to reason then, that the only kids with CIs that she would know would understand spoken language very well.
Also in her post, she mentions that the school this girl goes to does not have any auditory or speech therapy. That the classrooms are completely voice off. I have to call this bluff. There is a giant hole in this story. A hole the size of Texas. Simply put: It is not true! My son goes to the same school, and he receives therapy everyday, from a qualified therapist. They are in the process of even having an audiologist qualified in mapping CIs at the school. It doesn't sound to me like the "voice off", anti-speaking environment that this blogger was portraying it as. I can say, having had occassion to sit in meetings with the principal of this school, she is dedicated to showing that JMS is completely capable of providing any and every service for any and every deaf child in Utah. So while this blogger will attempt to paint a different picture, I can tell in my experience, her picture is a fantasy and nowhere near the reality.
Finally, to add my two cents about the "discussion" she was trying to start, just because a child prefers signing over oral and auditory communication, does not mean that they are in any way inferior to the children who prefer auditory and oral communication. I don't care what the reason is why my son prefers signing over oral communication. It doesn't matter to me. I don't think anyone has the right to examine the choices I have made concerning my children, and decide if they are right or wrong. The right to raise my children is my own sacred right, and I believe it is everyone's. I may not feel this bloggers choices are right for my children, but I would certainly never tell her her choices were wrong for her. I know, because I've chosen ASL for my kids (they chose it, actually) that makes me an extremist, but in reality, the only thing I am extreme is allowing each parent to make those choices for their own kids. No one knows their kids better, so who is better qualified than them?
I love my son. I love who he is, and his language is part of who he is. I am so proud of him. He is unbelievably smart and perceptive. I wouldn't change a single thing about him. I know it may be hard for some people to understand, but I believe my son prefers to be Deaf. I remember one time, we were trying to get him to wear his processor, and he told us no. He told us, "I'm deaf. I don't hear." I am so proud of my son and who he is, because who he is is amazing. He is totally capable of learning spoken language, but he loves his sign language. It is a part of who he is. I know, this blogger might respond that no one is saying that I should take that away from him, that her daughter does both. And that is all true. I only say it, so that when I say that it's not an issue of mapping or which audiologist we go to, that it is an issue of his choice and his preference, that when I say that, it might somehow make sense to her, and she can lay off us. I am glad she has found a good path for her daughter. Can she say she is glad we found a good path for our son and our daughter? Or is she still bugged because it is different than the path she chose. Isn't that what an extremist does? Try to push their beliefs and experiences and opinions on others?
For the girl in the original story, does it matter which caused which? Isn't the most important thing that she is happy, that she has a language and friends and peers? Or does that only count when that language is spoken English, and those friends and peers are hearing children from the mainstream school? Is happiness only found when kids go to the neighborhood schools, or can they be happy going to a deaf school with their deaf peers? Can hearing parents only really have a meaningful relationship with their deaf child when their deaf child can hear and speak just like them? Or is it possible that those hearing parents could become proficient in a new language and a new culture, and have just as meaningful relationship? I guess, again what I am saying is, does it really matter, or is the only path to raising a successful deaf child the one that this blogger chose for her daughter?

Choosing Sides.

Earlier this year, I had planned to make this blog private. I had every intention of doing it. However, I never wrote anything and just didn't do it. Now, I am not going to make it private. There are a lot of changes happening here in Utah concerning our deaf children, and I don't like them very much. My wife and I have always wanted our kids to learn both ASL and spoken english. That has always been our goal. Our son, Johnny has shown recently that he is not very interested in the spoken language, but he still loves signing, and is pretty good at it. Eliza shows more of a tendency to vocalize than Johnny, but she also signs quite a bit. That is probably her main mode of communication. We encourage our kids to do both, and at first thought that we would get that kind of support from Utah Schools for the Deaf and the Blind. Basically we wanted our kids to develop and flourish in every way they could. However, the recent changes by USDB are forcing us to choose one or the other. They will not provide services for parents who want both in their children's lives. I am writing this blog post to state my position on it all and why I feel that way.
First of all, I think it is wrong to force parents to choose one or the other path when the child is only 45 days old. Why? How can a parent know which way would best benefit their children at only 45 days? They can't. At first, we wanted only oral for Johnny and Eliza. However, as time went on we realized they responded better to signing. Imagine if we had to make that choice at only 45 days. I think we would have made the wrong choice for our kids, and there would have been years of frustration following it. I think the real goal of USDB is to eliminate the signing completely. At 45 days, parents who are hearing are still in shock about having a child with hearing loss. They have not yet accepted it, and will only think on the doctors and audiologists who have told them that their children can be normal, happy kids. With modern technology they can hear and speak just like everyone else. The parents, who are still in shock, will overwhelmingly choose the oral route at 45 days, and eventually the ASL program will just fade away. I think this is the real goal of USDB. Utah is a very pro-oral state, so why should the state run school be any different.
So where do I stand? Since I am being forced to choose, I am choosing the ASL/English program for my kids. Before I get a lot of comments about how I am limiting my kids potential, I want to point out a few things. Only in the ASL/English program, will both ASL and spoken english be encouraged. Between the two programs, as now outlined, it is the only one that offers choice. Yes, ASL will be the primary language, but what is so bad about that? It is a beautiful language, and it connects them to a larger community of support and strength. The oral program not only discourages signing, but forbids it completely. There is no option, no choice. No opportunity for my kids to reach their full potential. In the ASL program, my kids will go to school with other deaf children. They will communicate with their friends in their native language, they will receive instruction in their native language, they will be taught that they should take pride in who they are and develop a healthy sense of deafhood. In the oral program they will be mainstreamed into a normal school, where kids will only see their differences, where teachers will spend most of the day talking at them, not to them. They will grow up in atmosphere where they are constantly told how "impaired" and "disabled" they are. For me and my kids, I don't feel like this is right.
I am writing this post, because they are forcing us to choose sides. If you are a parent who is currently doing both, I hope you will join us on this side. Their goal is to take away our options. Don't let them. By choosing the other side, our options are gone.

An Open Letter to Parents of Deaf Children

Dear Parent,
As my last public blog post, before I go private on February 15, I wanted to write to the parents of deaf children out there. In particular I wanted to write to the hearing parents who have just found out that their newborn baby is deaf. I am not writing this to tell you what to do, but just as advice from someone who has been where you are. We are not perfect, and we haven't figured everything out yet, and the choices and decisions we have made may not be the same decisions and choices you make, and that's ok. There are just some things I wish I had known when I was where you are.
The first thing I wish I had known was that it's not the end of the world. I know how you might be feeling right now. Everything you had ever envisioned for your child, now seems to be linked to the ability to hear, and you might be wondering what your child will become now. Your child will be wonderful. There is nothing to hold them back from that. Having a deaf child is a lifestyle change, but it won't keep your child from a happy childhood and growing up to be a healthy, successful adult. I remember thinking about Johnny growing up deaf, and I thought, well he can't play sports, he won't like music, how will he learn how to drive? Now, I realize he can absolutely play any sport he wants, there's no reason why he can't like music, and what if he doesn't? And driving? He can absolutely do that. I also had concerns about him dating and finding someone to marry, him getting an education and getting a good job. I have met enough deaf adults now to know that he has every opportunity to be just as successful as any other child.
The other thing I wish I had known was that the Deaf community is wonderful and ASL is a beautiful language. I just want to pause here and say we did get a cochlear implant for Johnny, and are planning to do so for Eliza. I remember when we found out about Johnny's hearing loss, we felt like we were in the middle of a whirlwind, and when we got out, we were committed to an oral only approach. The doctors and nurses and audiologists definitely push it a lot. One audiologist discouraged us from using sign at all with our kids. We were still in the phase where we felt like all of our dreams and aspirations for our children was linked to hearing. We wanted our kids to be "normal" like all of the other kids. The problem for us was that we had to wait 6 months before Johnny would be implanted. He was already almost two. That would be another 6 months with no language. We made one decision then to go against what the professionals were telling us. We decided to sign. As a result, we sought help. We began having a deaf mentor come to our home, and I began taking ASL classes in school. We began going to deaf activities where there was a lot of signing. Johnny caught on to ASL very quickly, and he loves it. The other thing we noticed was how open and accepting the deaf community was to us. We couldn't believe this was the same culture and community the professionals had told us was very closed off and unwelcoming to newcomers. They will welcome your child and will help you. Why would you exclude yourself from people that have been where your child is? You have never been deaf yourself, so you don't know what to expect. The deaf community will love to see your child, especially if you are making an effort to learn ASL and teach it to your child. We have met so many wonderful people in the deaf community. The other thing we loved was that as we went to these activities, we noticed a difference in how they saw our children. There was not the same feeling of can't and disability. The saw our kids as smart and cute and great. They saw them as normal.
The last thing I would say is focus on what your child can do instead of what they can't. Don't think "can't hear", instead, think "deaf". There is a difference. The first focuses on something your child isn't, while the second is something your child is. They will always be deaf. despite what doctors or audiologists might say, there is no cure for deafness. So don't look at it like a disease or ailment. Teach you child to be pleased with who they are, to be pleased with being deaf. That will start with you feeling that way. Ask yourself if you love your child any less because they are deaf. When you find out that the answer is no, then you will start loving your child because they are deaf. Cochlear implants are wonderful tools, but please consider getting to know your local deaf community. Please consider teaching ASL to your child and learning it yourself. You will only find positives when you do. You will find more friends and allies to your cause, and you will find new ways to appreciate how truly amazing your child is. You will find talents and skills you never knew your child had. In short, it will only bless your lives. It has definitely blessed ours.
Now there will be some who read this who will totally disagree with me. That's fine. I truly believe that you are doing what you feel is best for your child. Understand that I am too. This is just an invitation to parents out there who are unsure or who may be wondering. It is an invitation to step out of your comfort zone, try something new and see how it could be a positive force in your life and in the life of your child. I am not a professional, I have no degrees, so really, what do I know? All I can do is tell you how our experience has been. I would never ask my son or daughter to give up signing, and I am grateful
for it and our local deaf community.
Thank you for reading this. And thank you to those who have been reading my blog these last few months. I have enjoyed sharing my life with you, and look forward to continuing to share in a more private fashion.
Sincerely,
Jake

Changes

Because of concerns that my wife and I have about our growing family, I have decided to also make my blog private. With our son starting school and being out there more, we just feel safer not having our whole life open on the internet. If you would like to continue to follow my blog, please give me you email address and I will make it happen. The blog will be private as of February 15th. Thank you for reading.

What the!?

We had quite the surprise today when we went to meet with the surgeon about Eliza's surgery. Everything with the surgeon went really well. He had no concerns about her cochlea or her candidacy to be implanted, so he sent us to his assistant to set the date for the surgery. We figured it would be smooth sailing from here. After all, we had been through this all last year, so we knew what to expect. Johnny had to wait so he could wear the hearing aids for six months, but eliza has had hers for a year now, so we didn't foresee any obstacles.
Then came the shock. It came when his assistant asked what insurance we had. We told her it was Selectmed, which we had last year, so we had little worry about it. She kind of cringed and said they didn't like Selectmed. I told her we knew that, but it wasn't a big deal because Eliza had her hearing aids for a year now, so there shouldn't be a problem. Then she dropped the bomb. Because of a mixture of things, including, probably the oncoming healthcare reforms, and the parents who had battled Selectmed for coverage for bilateral implants, Selectmed had changed their coverage of cochlear implants. Apparently, they will cover bilateral implantation. However, they will only cover a lifetime maximum of $35,000 toward cochlear implants. Sounds like an ok compromise. Here's the problem: the average cochlear implant procedure costs $60,000. That means whereas Johnny's procedure cost us roughly $1800 out of pocket, Eliza's would cost us $25,000 out of pocket. It floored us. I had heard about changes coming in insurance coverage because of what's happening in Washington. I did not know it would affect us so profoundly, so quickly. We were just staggering trying to figure out what we were going to do. The assistant had several suggestions, which we will look into. Her main concern was that we could possibly get her bilateral implants for the same price, which these kids deserve, so they wouldn't be disabled anymore. I smiled and nodded.
Before anyone out there thinks that we might be bad parents because we would even make money an issue in this situation, just calm down. First of all, to pretend that money is not an issue, is being naive. I love my kids, and I will do anything for their benefit that I possibly can. I have my limitations, and money is a real limitation. If I don't have it, I can't pay it. Secondly, knowing what we know now, I don't equate cochlear implant with Eliza's chances on a successful, fulfilled life. Who she is is not dependent on her ability to hear. Her ability to communicate is not hindered by her deafness. Her opportunities to have friends and be part of a meaningful society is not hindered by her not hearing. We know enough Deaf people to know that they are just as happy, and just as fulfilled as someone who hears. Our kids will be comfortable with who they are, and will never have to apologize in anyway for who they are not, to anyone. The implant is a tool to help them, but I refuse to let it define them. Neither of them need to be afraid or ashamed of being Deaf. All that being said, the third thing is that we are working on figuring out a way to make it happen for Eliza. We have options for our insurance through my work, and we are in the process of finding out if any of them have better coverage for CI. Our open enrollment period is not until November, and would not take affect until next January. Fortunately for us, we are having a life changing event in March or April in the form of a baby. I have already contacted my HR and confirmed that at that point we can change our plan if we would like, and it would take effect the next month. So, our plan is to wait until then and change our insurance and go forward from there. Just like Eliza came in time to let us know that Johnny was deaf, Jak is coming in time to help her get an implant. My kids are so thoughtful.
We were worried at first, but just like always in our lives, the Lord has provided a way for us to do what we feel is right for our kids. We have been amazed throughout all of this at how often we find ourselves making choices that go against the grain, and how often the Lord has opened the doors for us.

The First Week, a Week of Firsts

This was the first full week of the new year, and what a new year it has been for our family so far. I feel like our life is changing so fast and I am watching my kids grow up on fast forward. It's amazing. This week was full of first experiences for our kids, in particular, Johnny. He is not my baby boy anymore, he is a big boy. And Eliza, I can't believe it, she is just learning things so fast. It is just amazing.
Monday was Johnny's first day at his new school. We were nervous about how it would go for him. Mostly, we felt that he would be just fine, but there is always a part of you that feels a little nervous that he might be scared or nervous himself. Not Johnny. He just walked into the school with his backpack on, walked with us to his new classroom, and took his teacher's hand and basically just waved good-bye to us. He was just happy and excited to be there. After his first day, his teachers told us that he was just excited all day long. He loved it. The next morning, he was excited to get dressed and go to school.
Tuesday morning, before he went to school, we had a dentist appointment. It was Johnny's first cleaning. I was nervous about how he would do. We tried to have him go first, but he was so nervous. He didn't understand what this weird guy was trying to do, and he did not like the chair. He was just really tense, and clamped his mouth shut. So we decided to let me go. He sat and just watched the dentist as he cleaned my teeth. he was really good, just very interested in what was going on. The dentist, at the end of my cleaning had Johnny sit on his lap, so he could see the mirror and the pick and how the worked. I was hoping Johnny would get it. After I was done, I signed to him that it was his turn, and he just sat right in the chair, and the dentist came toward him with the mirror, and Johnny opened his mouth wide and let the dentist clean his teeth and floss them and polish them. He was really good. The dentist even commented on how good of a patient he was. It was a lot of fun.
After the appointment, we took Johnny to school. He was just as excited the second time as he was the first. It was fun to see him after school. He lined up with the other kids in the hall and obeyed his teachers as they signed for him to sit along the wall. He was so good. He waved at us, but just waited until everyone was going out to the busses. It was a lot of fun to see him look so grown up. It was fun to see him with his deaf peers, and speaking his language, and to be a part of something where he was completely involved. After seeing him this last week, I have no doubt that we made the right choice in sending Johnny to the signing school. They were so excited to have him there, and he was so excited to be there. It was just cool.
THursday, he rode the bus to school. He wasn't nervous at all. He climbed in and saw his old car seat and thought it was cool. The van was full of other kids going to his school, and they were all signing and he was just happy to be there and part of it.
It has also been great to see him with Eliza now. He plays so well with her, for the most part. He always takes the time to get down on her level and teach her a new sign. She knows that, and so she always taps him on his shoulder and points at something and then signs what, so he can tell her what it is. Of course, as a result, she knows all the super hero names, dinosaur, fireman, police, cars, you know, all the boy stuff.
The kids are growing up so fast. It is unbelievable. It makes me want to spend as much time with them as I can, so I miss as little as possible as they grow up. It all happens so fast.