Interesting Comments from Steve Noyce

A new article is out from The Salt Lake Tribune. It can be found here: http://www.sltrib.com/sltrib/home/51268716-76/deaf-language-noyce-parents.html.csp?page=1

It has some interesting comments from Steve Noyce in it. He says: “I don’t have any problem with people being an advocate for American Sign Language,” ... “I wish those who advocate for ASL wouldn’t have a problem with those who advocate for listening-and-spoken language. My role is to support very strongly both programs equally.” First of all, I think this statement clearly shows that he considers himself someone who is advocating for the LSL path. The last part is true, that his role is to support both equally, but clearly, since he wishes those who advocate for ASL did not have such a problem with those who advocate LSL (Steve Noyce), he does not strongly support both. This is all I have been asking for from the beginning, is someone who is more moderate as our superintendent. He or she should not have strong feelings one way or the other, but instead should truly support the choices for parents. Steve Noyce also says that he hopes that the two tracks will empower parents, but in reality they take that power away from parents. I can't speak for everyone, but I sure felt empowered as i was told by USDB after we chose ASL that we would no longer receive the auditory and speech therapy Eliza needed. I felt even more empowered as I heard from USDB employees that because we had chosen ASL for our daughter, she would not be considered a candidate for a cochlear implant. You're right, Noyce, this two track system is very empowering. What was the most empowering was how I sent emails to Noyce and Day Mullings, and got no responses. Made me feel like king of the world. Let's be honest, if you are choosing LSL, the new two track system is very empowering, but if you want a bilingual, bicultural approach, the new system is anything but empowering. I support any plan where all parents are truly empowered.

According to part C of IDEA (Individuals with Disabilities Education Act), which governs early intervention, it discusses the Individualized Family Service Plan. This is where, at the beginning, the family meets with USDB, in this case, and sets up services based on what is available, based on the needs and concerns of the family. This means it should vary from individual to individual, and should not be a choice of two predetermined paths. That is not individualized at all. I felt like this was closer to what we had when Johnny and Eliza were first identified, but then last year I had to pick from two different paths for Eliza, neither of which I felt met her individual needs. We were assured by Day Mullings in a town hall meeting that it was the ASL/ENGLISH path. What we were not told was that if we picked it, the English part does not start at all until pre-school. So, after a year of listening and auditory therapy, our daughter had no services for listening or spoken English. She would end up having a break from this for almost 18 months, meaning she would probably regress in her oral skills, and she would have to make up even more ground when she started pre-school. Which brings up an interesting point. Steve Noyce mentioned that teachers in PIP are trained in oracy, just like in the pre-school and k-12 programs. I can tell you that our ASL specialist is very good about having an "ASL" day and a "talking" day, but this does not compare to the therapy that is available to Johnny at JMS. The same therapy that was available to Eliza, but is not now. The oracy available at JMS is amazing, but it is absolutely not available to children in PIP. In fact, like us, other parents we have talked to have informed us that they have been told they shouldn't pick the ASL path if they are considering cochlear implantation for their kids. Like us, they have been told that oral and auditory services are not available through JMS at all. So while Steve Noyce is saying in the newspaper that "oracy" is available in the infant program, as well as the k-12 program, his employees are telling parents the opposite. Our experience has shown that speech and listening services are in fact not available to ASL kids in PIP, and the oracy that is available at JMS has more to do with Jill Radford than Steve Noyce.

I am happy that there is a new orientation program for PIP. My wife sat on the committee which designed this orientation process. I was shocked, however, to read that this was established by Steve Noyce, and that he also was the one who made sure there were two representatives, one ASL and one LSL. I guess it was shocking to me because this was suggested in the committee meetings over and over to ensure the parents would receive unbiased information. However, Day Mullings made sure to mention that Superintendent Noyce would not allow there to be two, it would only be one, and all of her suggestions were LSL- either specialists or deaf adults who were LSL. I remember being frustrated along with my wife because after the committee meetings were over, this was how it was going to be: One orientation specialist, LSL. Then we met with Jennifer Howell, who was at the time the associate superintendent. She informed us that she had finally gotten it approved for two deaf adults, one ASL and one LSL. I fail to see how Steve Noyce set up that program the way it is now, when he wanted it to be one specialist who was LSL.

The stats in the article were also interesting. They mention that 74% of infants in PIP are in the LSL path and 15 % are in the ASL path, while 10% are undecided. I would love to talk to some of these parents that have chosen the oral path, just to find out what they would have chosen if there had been a true bilingual/bicultural path available. I am not questioning the validity of their choice, but I wonder how many of them chose oral because they were told if they chose ASL they would not receive any of the oral services. Like all parents of children who are deaf or hard of hearing, I yearn to communicate with my child, like any parent really. It would be hard if someone told me that if I chose the ASL path, I would not be able to communicate with my child, that they would never learn to speak or listen, I would be cut off from them. If I was told this, and was told that the only way they could get any of these services was to pick the LSL path, and I only had three months to choose, I would have picked the LSL path. We were lucky because we had more time, and we were able to get to know our kids first. We also knew that JMS was not "voice-off" all the time, so we felt like we would be ok choosing ASL for our daughter. I wonder if other parents would have chosen bilingual/bicultural if that option were there, if they had an option other than just ASL or just LSL.

My mother read the article. She called me right away, and being someone not as familiar with everything, she said she got the impression that the LSL path was just amazing, that these cochlear implants were amazing, and if she didn't know better, Steve Noyce was great for really pushing this LSL. In other words, she felt he was doing a really good job campaigning for LSL. Sure sounds like someone who strongly supports both sides equally.

Letter to Parents of USDB Kids

Dear Parents,

I am writing this letter and posting it on my blog to explain why it would be in the best interest of every parent and every student of USDB to have a new superintendent at the Utah Schools for the Deaf and the Blind. I hope, as you read this, you will do so objectively. I will try to keep my biases out of it, and will attempt to give objective reasons why I am concerned about the current superintendent.

Recently, the Utah State Board of Education voted on possibly cutting the USDB budget and closing down the schools, if $20 million dollars needed to be cut. This vote happened on February 4, 2011. On Monday, February 7, 2011, the Advisory Council for USDB held an emergency meeting to discuss the vote by USBE. At this meeting, it was reported by numerous sources that part of what caused the vote by USBE was all the infighting going on within USD. It appears this was only a small part of why the USBE voted the way they did.

According to other sources who are close to USBE, the main reason that the School Board voted the way they did was because they were trying to send a message to the state legislature and governor's office: there is nothing left to cut! Education is down to its bare bones already, and if you want more cuts, then fine, let's cut the one thing that will get the most attention: Schools for deaf and blind kids. Unfortunately, this backfired, and the USBE ended up looking like the bad guys.

There was another reason why USBE was willing to cut the funding to USDB. This reason was alluded to by the Superintendent himself. He mentioned in the meeting with the advisory council that in the few times he had appeared in front of the State Board of Education, he did a poor job educating them on what services USDB provides. This same issue became apparent in the PubEd Appropriations Sub-committee meeting that happened on February 8, 2011. In this meeting, Dr. Schumway, State Superintendent of Schools, deferred to a finance expert from USBE when asked about the possible cuts. This expert said that the reason why USBE saw this cut as a possibility was that most of the services provided by USDB were in fact provided by the school districts anyway, so there was no real need for a separate entity. Mr. Noyce informed the sub-committee that this was not true, that most of the services were provided by USDB through the school districts, but not by the school districts. Sources close to the USBE confirmed that what was shared by Steve Noyce in the sub-committee meeting was news to the Board of Education. They had no idea how USDB operated or what services they provided. By Steve Noyce's own admission, he has done a poor job informing them of this.

This is my first reason for having little to no confidence in Steve Noyce's ability to do the job. He does not know how to work with the State Board of Education. In the 18 months or so that he has been in his position, the communication between the State Board of Education and The Utah Schools for the Deaf and the Blind has broken down so much, that the State Board has no idea what is happening at USDB. This concerns me as a parent. How can our school get the funding and support they need, if the State Board does not know what they need it for? Steve Noyce should be our voice with the State Board, and he has obviously failed us there. Our superintendent should be there at every meeting making sure he is fighting for us all the time. Instead, Mr. Noyce was not at the USBE meeting because USDB was not on the agenda. As a result, a vote was taken where the door was opened for the end of USDB.

The second reason I have no confidence in Mr. Noyce has been his inconsistency. He has said from the beginning that he absolutely supports parent choice. I agree 100 % with this idea. I positively believe that the people best able to choose the communication path for their child are the parents. No one knows their child better than they do. Mr. Noyce would say publicly that he agrees with that. He has told me that privately. Normally, I would take him at his word. However, his actions speak louder. He believes in parent choice, as long as they choose one of two paths he has set up. He believes in a "one size fits all" kind of philosophy. Every deaf or hard of hearing child fits completely in one of two categories: LSL (Listening/ Spoken Language) or ASL. That's it. There is no in between. Despite what has been said concerning it being the "ASL/English" path, there is no true bilingual option within USDB right now. This is an option that many parents want, but cannot have. My wife spoke with a mother who was frustrated because she chose the ASL path for her child, which has caused problems because she also wants a cochlear implant for her child. She was wanting him to learn both ASL and spoken English. This is not an option within USDB. In fact, Steve Noyce has worked very hard to ensure that the LSL kids are completely separate from the ASL kids. If Mr. Noyce truly believed in Parent Choice, there would be a bilingual option. To make this clear, bilingual is different from TC or SimComm. Bilingual would mean the child would become fluent in two different languages, in this case ASl and spoken English. We need a superintendent who truly believes that each child is different and the services each child receives from USDB should be catered to that individual child's needs, instead of forcing each child down one of two paths. Mr. Noyce does not believe in parent choice, but he says he does. What else has he said, that is not true?

One of the comments made in the advisory council concerning the ASL/Deaf Community was that they needed to know the proper channels to file complaints. They needed to know that a complaint should be filed with the teacher, then the principal, then the superintendent, then the advisory council, before anything should be sent to the school board. This is my third issue with Mr. Noyce. I have voiced my concerns to him in emails. I never received a response. I asked him about an email I sent to him one time, and his response made me believe that he rarely checks his emails. In any case, I never received a response. It was at that point that I sent an email to a member of the schools board. People know the proper channels to go through, but Mr. Noyce chooses to ignore that part of the population which does not 100% agree with him. Then when they complain higher, he gets upset and defensive. He calls them nasty, mean emails, and he calls the people who wrote them fanatics. He is not looking to work with people he disagrees with, instead he goes to work slandering them and tries to drag their names through the mud. In my opinion, we need a superintendent who is willing to work with every part of the diverse population USDB serves. We need someone who is willing to see both sides of an issue instead of blindly calling the other side bad and nasty. We need someone who is more moderate. Steve Noyce has never made an effort to reach out to the Deaf community. He has ignored them from the beginning, and as they voice their concerns, he ignores them.

These are my main concerns with Steve Noyce. These are the reasons I would like to see a change at USDB. He does not represent our kids well at the State level, according to his own admission. He says one thing, but then does another, eliminating my right as a parent to choose what is best for my kids. He makes no effort to reach out and work with the Deaf community, the adults who have been through the education system and only want to make it better for every deaf or hard of hearing child. These three things are unbecoming of any person who would hold the title Superintendent, and we as parents should not stand for it. Whether your child is LSL or ASL, he does not have the children's interests at heart, but rather, as it seems, his own agenda.

I am not a "fanatic". I am a hearing individual. My first contact with the Deaf Community happened about two years ago after we found out our son is deaf. My wife is also hearing. We are hearing parents of two deaf children. We only want the best for them. We feel that anyone who steps in as superintendent and goes to work eliminating options and choices for any parents is in the wrong. Our son, Johnny, uses ASL as his primary form of communication. He also has a cochlear implant. Fortunately for us, he has access to both ASL and spoken English at JMS, but the access to spoken English for him at this point is limited. He is luckier than our daughter. She wears hearing aids and has shown great interest in both signing and vocalizing. She was excelling at both through USDB services until last summer when we were forced to choose one or the other. We chose ASL. Immediately, any oral or auditory services we were receiving ceased. We fought this, all the way up to Martell Menlove, but nothing changed. We were fortunate to find some form speech therapy outside of USDB through DDI Advantage. However, her speech therapist does not specialize in working with kids who have hearing loss, like a USDB therapist would be. She will have access to these therapists at JMS, when she turns three. That would have meant a year without any kind of therapy for her. These are the "choices" Steve Noyce believes in. That is why I do not believe in him.

Sincerely,

Jake Dietz

USDB: In Memoriam?

The Utah State Board of Education voted on a measure this last Friday that could possibly put USDB out of business, meaning closing the place down. Of course this is all based on a required base budget going into the legislative session, and chances are there will be enough funding to keep USDB going. For now, however, USDB is on the chopping block. I have spent a lot of time this last weekend and the last couple of days reading about what happened and writing to my local legislators to make sure this does not go any further. I have also attended an emergency meeting of the Utah Schools for the Deaf and the Blind Advisory Council, as well as this morning I attended a meeting of the PubEd Appropriations SubCommitte, where USDB funding was on the agenda. The good news is that it sounds like very few of the legislators want to cut any funding to USDB. The bad news is that I am hearing a lot of reports about why this happened. One keeps being brought to the front of the conversation. It has to do with all the infighting. This comes up again and again. The story says that Utah State Board of Education recently received numerous emails concerning the current Superintendent at USDB. According to sources who have neither seen nor read said emails, these were very nasty emails, and very rude. According to sources who have spoken to a majority of the School Board members, the School Board is fed up with USDB, and doesn't want to deal with them. All of that may be true. These same sources are now using every opportunity to point out that this whole situation is the ASL community's fault, because they sent the letters, and according to this source, all they do is complain. This is all done under the flag of unity. It's disappointing. Now is not the time for us to let extremists from either side have the floor. The state is threatening to take away our school completely. Now is the time for us to truly stand united, find a moderate voice, and use it. Let the state legislators know about all of the good things that have come from your experiences with USDB, whether your child is blind or deaf, whether the speak or sign, it does not matter. The bickering and fighting must end now! I understand that later there might be battles, but right now we must come together and stand for the School, not against each other. No school program is perfect, and parents and other concerned individuals should always have the right to make recommendations for how to make it better. Sometimes, though, we need to put that on pause, stop pointing fingers and be one school, one community, or we may lose it all.
I am so thankful for USDB. The programs we have been a part of have made our lives so much better. My son Johnny would not be where he is today without USDB. He has found a piece of his identity there. He has found friends there. He loves it. Likewise, Eliza has grown so much through her experiences at USDB. She is so smart for her age. Most importantly, through USDB we discovered a new way to connect with our kids. These are the positive affects USDB has had on my life. They have done it through programs like the Parent Infant program, where we have had a USDB employee in our home every week since it was discovered our children were deaf. Our PIP advisor, Mindi Allen has been an anchor for us through a lot of stormy weather. She has helped us through a lot. Our kids have also received speech therapy through USDB, from Carrie and Paige, both have been awesome. It is these kind of services that the school districts will be unprepared, and possibly unable to provide. I hope we will take this opportunity to write to the school board here in Utah, to write to the legislature here in Utah and let them know how much good comes from USDB. I hope we will spend our time doing that, instead of going on the internet and writing about how bad the other side is.

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