Modern Day Heroes

A Response to a Comment and a Response to an Article

2011-05-10T18:24:00.000-07:00

This will be a long post, so i apologize for that now. I wanted to write this in response to a comment posted on one of my recent blogposts concerning what is happening with deaf education here in Utah. This comment illustrates the views of some who support Steve Noyce. It at least represents the views of one person who supports Steve Noyce. I will not be so naive as to think it represents every parent who chooses LSL. I have more faith in people than that. The comment can be found on my post entitled "An Open Letter to Parents of USDB Kids". Here is the comment in its entirety:
"confused said...
To the deaf community, you all should be proud of yourselves. You and you alone have destroyed the future for all deaf and hard of hearing children in the state of Utah. You and you alone have pushed education of deaf and hard of hearing children in the state of Utah back 50 years. Research what deaf education was like 50 years ago, this is what will happen to our deaf and hard of hearing children if the Utah School for the Deaf and Blind is closed down. You have taken your petty argument with Steve Noyce and ruined what language/education options that are available in the state of Utah. What will happen to the babies who are born deaf or hard of hearing when the PIP (Parent Infant Program) is gone? These babies will get services from the Health Department. Do you think the Health Department will give families a language option? Do you think they will offer ASL as a language option to families? How many of the health department workers have degrees in Deaf Education? How many referrals will JMS get from the health department? How long will JMS survive without the referrals that came from USDB PIP?
What will happen to the preschoolers who are deaf or hard of hearing when the USDB preschools are shut down? Will your local school district offer ASL and provide interpreters for your children? Our deaf or hard of hearing children will be put into resource rooms and educated with all the other children who are on IEPs. If there are no interpreters to go with ASL children to mainstream classrooms they will sit in resources.
The very group that is supposed to be offering support for the next generation of ASL/Deaf and Hard of Hearing children is making that the language options will be gone in the state of Utah. Shame on the Deaf Community/ASL advocates. You should found other ways to make changes in the deaf language options. Making the Utah Office of Education tired of listening is not the way to make changes. It is the way to get all language options taken away from our children. I hope it goes down in history that the Deaf Community itself, ruined the future of deaf children in the state of Utah. You need to wake up and really look at what you are doing. I am sure that this letter will not be posted on your site, because I know of parents that have tried to post positive letter about their services from USDB and you have not posted them.
I guess it is okay if you don’t want to listen to the warning signs of doom. Where would you be without a school for the deaf? How will you community grow when deaf and hard of hearing children are educated in resource rooms because USDB is gone?

MAY 10, 2011 5:56 PM"
I just wanted to take an opportunity to address a few things in response to this comment.
First of all, I wanted to clear something up. I am not the Deaf Education Core Group. I am not a member of the Core Group. Neither officially, nor unofficially, am I affiliated with the Core Group. They have, with my permission posted entries from my blog, as well as a link to my blog, but I am not the the Core Group, so I am afraid that the intended audience for this comment will not be reached. I do agree with the Core Group on some of their agenda, but I am not apart of it. I respect many of the members of the Core Group, but again, I am just a parent of two deaf children keeping a blog. That's it.
Secondly, I wanted to say that no one, that I know of, whether within the Core Group or out, is trying to bring down USDB. If anything, we are trying to work to make USDB better, for all of its students. No one is wanting to eliminate any choices for parents, but many are seeking unbiased support for their choice. Currently, some of us feel that while our choices are tolerated, out of legal obligations, they are not supported. Steve Noyce is a well educated, well experienced oral educator of deaf individuals. Like most administrators, any good administrator, he has an agenda, or plan for USDB. Unfortunately, I do not believe his agenda is in the best interest of all of the students at USDB. This does not mean that I feel that USDB should be dismantled or closed down. I think you will find that those who are part of the Deaf Community would fight to keep the school open.
Next, you bring up deaf education from 50 years ago. I can tell you that those for whom you intended your post will know much better than you what deaf education was like 50 years ago, 40 years, 30, 20, 10, etc. Unlike us, they lived it. They understand much better than we will the oppression they felt in the oral programs of old. Let us all work together to ensure that none of our children, ASL/English, or LSL, must go through that.
I would like to now address your point that the Deaf community should have found another way to address their concerns, than to write to the School Board. I just want to say that these continued accusations by some LSL supporters, that the Deaf community's letters to the School Board was the sole reason why they voted to possibly close the school, are beyond ridiculous. This was nothing more than political posturing by the School Board to let the legislature know there was nothing else to cut but programs to help the blind and deaf kids. I do not believe there was ever any real intent to close USDB. However, if there were reasons to close the schools, perhaps it would have more to do with the lack of representation by Steve Noyce (he was not even at the meeting where they took the vote), and the fact that there was $600 thousand shortfall in the budget last year, due in some part to poor planning by Steve Noyce. The thought was, perhaps the the school districts could provide the needed services for cheaper. We all know this is false, but the fact they believed this shows how little Steve Noyce has communicated what USDB does.
More importantly, when you mention that they should have found another way to address their concerns, what way were you thinking? They wrote to the officials that have been elected or appointed to make decisions regarding their concerns, which had to do with what is happening at USDB. They wrote letters to these officials. This is similar to writing to a member of congress when one is displeased with a law. They were following proper procedure when they did it, and beyond that, in this country, it is their right to do so. If they are concerned with an issue, then they should contact that governing body. That is what they did. I think it would be very un-American to think that they should not have done this. It was their right to do it, and I applaud anyone who would have the guts to write their leaders and let them know what they think.
As far as publishing your comment, I elected to publish it, not once, but now twice, on my blog. I have no control over what is published on the Core Group's website. I published your comment in the hopes that history will record the intolerance of the few LSL supporters who have made comments not just here, but also on any article published on the internet concerning Steve Noyce and USDB. I have been very disappointed to say the least. I have not agreed with Steve Noyce on many professional levels. I have never made any of my posts personal against him, because that is not the proper thing to do. However, it is disgusting to read some of the comments left by a few supporters of the LSL program. The unfortunate thing is that these comments drown out the more moderate, civil voices on either side.
Because this comment was directed mostly at the Utah Deaf Education Core Group, I wanted to post here a recent response written by the Core Group in response to the comments on the recent SL Trib article. This letter describes what they believe and what their issues are with Steve Noyce. This is what their stand, not necessarily mine. I will point out that they do mention a family who was excluded from an LSL play group. my understanding is that this incident was really a misunderstanding, and the ASL Families were not excluded from the play group, yet. Other than that, the information seems accurate with what I have encountered, and it also points out, again, that the Core Group absolutely supports parent choice:
In response to some of the comments that have been posted
in the responses to the article published in the Salt Lake
Tribune on Thursday, May 5, 2011
(http://clicks.aweber.com/y/ct/?l=5nlyw&m=JXKteP5tu8njdw&b=YV5cnmW60lR0yANbo6jJ1g
parents-program-deaf.html.csp), we wish to let our readers
know the following:

We are NOT fighting to get LSL removed
from the Deaf division of USDB. We respect parents' right
to choose LSL if they feel that it would work for their
children. This is NOT an ASL versus LSL battle. We have
never said that our goal was to have USD be an ASL-only
school. We only ask for fair, unbiased options for all
families and students, and for families to be able to
choose both options if they so desire.

Let it be known that in 2007, elementary teachers in the
Central Deaf Division of USDB who taught in the Total
Communication program* asked to be merged with JMS. Later,
in 2009, when Steven W. Noyce revamped Parent Infant
Program, he removed what was called the Total Communication
option (which included both sign and speech) and
restructured the program so that it offers either LSL or
ASL, which upset many parents who wanted both options. Mr.
Noyce also announced the phasing out of the USDB Total
Communication program at Churchill. The Deaf community had
no part of this change.

*The Total Communication program utilized signing and
speaking simultaneously and was ineffective for a number
of reasons, one of which is that ASL and English are two
distinct languages. Advocates of ASL/English bilingualism
support the utilization of both ASL and written/spoken
English in the instruction of deaf and hard of hearing
children, with the understanding that one or the other
language is used as appropriate and not simultaneously.
A thorough explanation of this, however, is beyond the
scope of this report.

Our first concern is for parents who WANT to learn ASL in
addition to obtaining the intensive speech therapy that's
provided to LSL parents and their children. We understand
that parents who choose the ASL/English bilingual approach
do receive oracy training, but that for some parents, oracy
is not enough. Parents who want LSL training should be
allowed to learn ASL as well if they want it.

Along these lines, let it be understood that we support
the concept of ASL/English AND LSL, rather than ASL/English
OR LSL (AND, not OR). As discussed above, PIP has been
restructured so that parents can only choose one option
or the other. We feel there should be a way parents can
choose both.

Our second concern is the apparent favoritism of one
program over the other, particularly in the Deaf division.
In one example, speech therapists have been TAKEN AWAY from
parents who had already had speech therapists from USDB
working with their children, but who then chose the
ASL/English path. Another example is the lack of a
playgroup for ASL/English children. In fact, ASL/English
parents who were attending the LSL playgroup were asked to
stop attending. A final example is the allocation of
$440,000 to the Sound Beginnings, an oral program in Logan,
without an equivalent allocation to an ASL/English program.

It has been said that the ASL/English bilingual program in
SLC is receiving funds that other programs aren't and the
playground has been listed as an example. The fact is that
funds for the playground have come from the PTA and, to
many people's surprise, the legislature - brought up by
an interested senator. USDB has NOT allocated ANY funds
towards the playground. Furthermore, the playground has
been designed to accommodate ALL disabilities, including
those with visual impairments. It has ALSO been designed
to be safe for children with cochlear implants. All
deaf/hard-of-hearing, blind, and deaf-blind children are
welcome to play on this playground once it is set up.

Likewise, the building that's occupied by students in the
ASL/English bilingual program in SLC was obtained after
years of struggle. There are 100 students in this program,
and rooms/teachers are needed for these 100 students.
Parents and teachers of LSL students tend to want their
children to be housed in local public schools so that the
kids are exposed to other hearing children, which is their
right. Parents of ASL/English students want them to be
educated together. Can we have the building for that?

As a side note, while it is true that the ASL/English
bilingual program was expanded with high school classes, a
predicted enrollment of 30 additional students to the
elementary and middle school classes for Fall 2010
mysteriously ended up being zero. It was eventually
discovered that negative information was circulating around
USDB regarding the ASL/English bilingual programs available
at USD and about sign language in general, causing parents
to NOT want to enroll their children at JMS.

Furthermore, there is actually a policy that there would
never be any separate "hard money" funding for special
education charter schools in Utah. Mr. Noyce and a few
others lobbied for this policy and it made the future
possibility of JMS to be a charter school again impossible.
This legislation made permanent, the placement of JMS under
the direction of USDB.

Our final concern is the termination of the two-year
contract for Steven W. Noyce, USDB Superintendent, due to
his 1. Favoring one program over the other programs,
2. Unwillingness to offer parents the option of choosing
BOTH LSL and ASL/English bilingualism, 3. Unbalanced
funding of USD programs, and 4. Bungling of the school's
fiscal-management.

Parents who want the ASL option aren't getting much support
here in Utah, particularly not from Mr. Noyce. We need a
superintendent who provides fair, unbiased options to all
families and students.

Finally and importantly, we, ASL parents and community have
the constitutional right to voice our concerns to the Utah
State Board of Education and it is their job to listen to
us. We feel that it is important for them to hear our
concerns in order to make effective decisions for USDB.

In addition, all of the information included in our website
can be verified by minutes from various meetings held by
the Advisory Council and other organizations. All of the
letters from parents were written by real parents who
actually went through the experiences that are recorded
in the letters. The information is real, not lies like
one of the comments to the article states.

FYI, we as a group have declined to meet with Mr. Noyce
face to face regarding these issues as we feel that such a
meeting would probably not be productive because of a long
history of his trivializing ASL/English bilingual issues.

Utah Deaf Education Core Group

Please forward this to as many people as possible. Thanks
Utah Deaf Education Core Group
Utah Deaf Education Core Group, 12268 Laurel Chase Dr, Riverton, 84065

A Plea to the Advisory Council

2011-04-21T06:05:00.000-07:00

Dear Members of the Advisory Council,

I would like to take some time as a concerned parent to discuss what Steve Noyce has accomplished over the last year and a half as our Super Intendant. I hope this letter finds its way to you at this critical time as you are reviewing his recent 360 surveys.

In the time that Steve Noyce has been Super Intendant at USDB, he has developed our school into one of the premier state run oral programs in the nation. This can be evidenced by the fact that he has been invited to numerous events throughout the country to talk about the LSL program in our state. I believe he has one more to Delaware where he will be the keynote speaker on this subject. There is no doubt that the oral program has flourished under Steve Noyce. He has spared no expense here, by building a new therapy center in ogden for the LSL pip kids and parents to come to, as well as bringing some top professionals in the oral field, like Day Mullings, who is the director of the deaf PIP. She also has been recognized as one of the best in her field.

But what about the blind kids? To Steve Noyce's own admission, the blind kids remain in deplorable conditions in some of their classrooms. He points out that it could very well be a fire hazard to have all of their needed walkers and other mobility equipment in the halls of their little portable class room. If their conditions are so bad, why is it that the LSL kids are getting some new center in Ogden where they and their parents can come and see what life is like for them, but we have done nothing to improve things for the blind kids?

As Steve Noyce continues to promote himself and his model LSL program throughout the country, how are things going at home? Since Steve Noyce has been Super Intendant, relations between USDB and the Deaf community have never been worse. When asked about this, Steve seems to have the attitude that he doesn't really care what they think, and that his community is out to get him. He dismisses their concerns as it being none of their business because they don't have kids in the program. This wrong. There are many in the Deaf community who do have kids in USDB. In addition to that, those I have had contact with in the Deaf community are concerned because they don't want this generation to have the same struggles as they did. They understand that a quality education is the key to a successful and bright future for any child. They fight for all deaf children, because they see them as their future. It is their business, yet Steve Noyce continues to try to distance himself from them.

Since Steve Noyce has been our Super Intendant, we have seen outside attacks on USDB, the most recent being the vote by the State Board of Education to possibly close down USDB. This was fought by the community, and the notion was taken off the table, but I wonder, under what other Super Intendants has this option been presented? Under what other Super Intendants, has it ever happened that they have voted to close the school?

Since Steve Noyce has been Super Intendant, USDB has had to face a major budget shortfall. Over half a million dollars. This has affected staffing and budgets throughout the program. This was a result of a rule the State Board passed in 2009, that went retro active and charged some districts for services provided by USDB, and then by USDB not being able to collect those funds, thus creating the shortfall. If this rule was nonexistent before that time, and the school districts were not planning on being billed for their services, then why did Steve Noyce include this in the budget to begin with? Now, not only is USDB short staffed as a result, but our kids will now suffer, almost all of them will miss three days of school because of the furloughs. Not to mention how this will affect the teachers and other staff at USDB. I wonder if we had not planned on this money coming in because it never had before, would we have ended up with a surplus, that could have been used to help with new facilities for the blind kids?

Since Steve Noyce has been the Super Intendant, we have seen numerous staff changes at USDB. Many people have been laid off. This does have more to do with the current economic situation than with Steve Noyce. However, there have also been numerous members of USDB staff who have left, or who are contemplating leaving because of Steve Noyce. I believe this shows a solid track record of not working well with those who do not agree with him. I think it shows a lack of leadership and management skills.

In short, since Steve Noyce has been Super Intendant at USDB, I, as a parent, have only seen a track record of mismanagement and blunders. Other than the booming success of the LSL program, I do not see vast improvements anywhere else. Yes, JMS is in a new school, but that process was already started and finalized before Steve Noyce came in. The relations with the school board have worsened to the point that they almost closed us down, relations with the Deaf community have worsened to the point that either side cannot talk with the other. There have been numerous and large budget and money issues. This does not look to me like quality work.

Thank you for your time in reading this letter.

Sincerely

Jake Dietz

Interesting Comments from Steve Noyce

2011-02-21T18:54:00.000-08:00

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

2011-02-16T15:03:00.001-08:00

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?

2011-02-08T13:30:00.000-08:00

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

2010-11-01T21:02:00.000-07:00

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

2010-10-29T14:17:00.000-07:00

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.

2010-04-13T11:40:00.000-07:00

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

2010-02-08T20:53:00.000-08:00

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

2010-01-31T21:56:00.000-08:00

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!?

2010-01-12T21:18:00.000-08:00

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

2010-01-09T21:29:00.000-08:00

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.

The Year in Review

2009-12-25T19:28:00.000-08:00

In place of a Christmas letter, I am going to post this on our blog, and cover what has happened this year with each of us. Hopefully this will be an easy and convenient way for people to See what we have been up to. Overall, it has been an eventful year, to put things mildly. A lot has happened with our little family, but it has all been a lot of positive growth for us.
Eliza has grown up from our little baby girl to our little toddler girl. I can't believe how much has happened with her. She received her hearing aids in January, and still wears them. She has gotten to the point that if she sees them, she will bring them over to us and want us to put them in. She is just doing what little toddlers do. She is walking all over the place, and becoming more and more independent. She has also started to develop an interest in everything traditionally girl. She loves little dolls, and phones and shoes and clothes. She is also coming along in the communication department. It seems that everyday she is learning a new sign. She also repeats a lot of sounds she hears, including her favorite, "Uh-oh". Johnny is her hero, and she follows him around nonstop and wants to do whatever he is doing. She is my favorite girl, and nothing makes my day more than when I come home and she comes running over to me to give me a hug and a kiss.
Johnny has been through quite a lot this year. Those of you who follow this blog know that already. He received his hearing aids in January, and they did little to help his hearing. However, he continued to pick up signing like crazy. It's been hard for mom and dad to keep up. In June, he went in for surgery for his cochlear implant. He was so brave! The surgery went well, and he received his processor a month later. His mapping was a struggle. Not because our audiologist isn't very good, but mostly because he did not want to just sit there and get mapped, and we had issues with our processor from the start. These things have been worked out, and he can now hear at around 25-30 dbs with his processor on. Now, whether he likes hearing is another question. Most of the time he doesn't seem to mind, but from time to time, he just does not want to hear, so he won't keep his processor on. We try to get him to keep it on, but he is two almost three, so it doesn't always work out. His main mode of communication remains signing, which we think is great. It is definitely a challenge to try to keep up with him on his signing, but we are doing pretty good, I think. In January, he will be starting pre-school at JMS, which is the ASL preschool in our area. We are very excited about this. We think he will learn a lot of very important social skills, and he will appreciate associating with kids who are deaf and sign just like him. He is my little hero, and it has been amazing to watch how he has coped and adapted to all of this through this year. He always has a smile on his face, and it's the kind that lights up the room.
Erica just keeps trucking along. She is pretty much the most amazing person in the world (even more amazing than Barack Obama). She has taken everything this last year in stride. I have just been amazed to sit back and watch as she has patiently gone to battle to get done what is right for her kids. She currently is staying home each day with the kids, and I am so thankful for that blessing right now. She makes it a point to find different activities and crafts to do with the kids each day. I've been amazed to watch how she has made choice after choice to benefit our kids, while sacrificing herself. Like when we decided to start attending the deaf ward in our area. It was out of her comfort zone, but she knew it would be best for our kids. That being said, everyone in our new ward has gone out of their way to make us feel welcome.
I continue to stay busy at work and at school. I can see the light at the end of the tunnel for school, and can't wait to reach it. This last semester I also started the Seminary teacher preservice classes at the institute. I love the class, and I really hope it works out. I can't picture myself really doing anything else.
The Lord has blessed us in abundance this year. Through all of our challenges, we have grown and have seen the Lord's hand at work. I am grateful to Him for my family that makes this life worth living.

Merry Christmas!

2009-12-25T19:01:00.000-08:00

Well, it was Christmas today, and I got everything I really wanted. The thing I wanted most was seeing my kids happy on Christmas morning, and they were. We had a nice evening at home for Christmas Eve. We ate a nice little family dinner at our little table. It was very sweet. Then we opened our Christmas Eve gifts, which are always pajamas. The kids also each got a blanket with their PJ's. Johnny got a firefighter blanket, and Eliza got a Cookie Monster blanket. They both loved them. Johnny wouldn't let anyone touch his. After we opened the gifts, the kids got a Christmas bath (which is the same as a normal bath, just at Christmas time). After their bath, we put them in their new pajamas, and we all snuggled down and watched a movie about Jesus, to help the kids realize what Christmas is all about. After the movie and some stories, it was time to put some milk and cookies out for Santa, then off to bed. It was a Christmas miracle, both kids were in bed and asleep before 8:00. It was awesome, and probably the last year it will happen.
We all got up at 6:30 this morning, and saw that Santa had come. Johnny was very excited as he opened his gifts. He loved his new fire engine and fire helicopter. However, the gift that got him the most excited was his Batcave. He started opening it, and when he saw what it was, he couldn't get that paper off fast enough. He wanted it out of the box right away, and has played with it almost nonstop since. Lesson learned for next year: have Johnny open things like clothes and backpacks before the toys, otherwise he loses all interest.
Eliza was excited about her baby doll stroller and her little baby doll, but she got really excited when she saw the Elmo in her stocking. She saw that and started pointing up at her her stocking and signing want. It was pretty cute. Her other favorite part was all the candy in her stocking. She kept bringing different candies to us and signing candy and open. However, like responsible parents we did regulate how much she could have.
After we opened gifts, we began the marathon of family visits that occurs every major holiday. We started this time and my dad's house, so Johnny could see his cousin Joseph before he went to his dad's. The two were kind of funny. Once Johnny showed up with his helicopter, Joseph only wanted to play with that, which was fine because Johnny only wanted to play with Joseph's Buzz. Kids are funny that way.
After we went to my dad's, we went to my mom's to see her. They always have snacks out on Christmas, and they just wait for people to come over, so it is really laid back and relaxed. Josh and I played a little Beatles Rock Band, which may be the greatest game ever made. Johnny took the opportunity to take a nap, which was probably good, but left him confused when he woke and we were ready to leave. He didn't understand, because to him we just got there.
After that, it was back to my dad's for Christmas dinner. We had the traditional turkey, potatoes and such. We stayed and visitid for a bit, and then it was off to Erica's parents, where we spent a couple of hours visiting there. Johnny was excited because he got another dinosaur movie there, which always makes him happy.
Then it was time to come home, and just crash. Johnny went straight to playing with his batcave, and has not stopped. Eliza is asleep, and I think their parents wish they were too. It was a busy day, but it was a great day.
To those of you who read this, I wish you all a Merry Christmas, and may the Lord bless you with all you need this season and the upcoming year.

The Fight for an Education

2009-11-06T18:59:00.000-08:00

It might be a little early to worry, but I am concerned about the education my kids will be getting here in Utah. Utah Schools for the Deaf and Blind fully supports an oral educational approach for our deaf kids. In their opinion, oral education is the answer. Deaf kids who are educated orally will be better able to learn and function in society. They will be able to compete on the same level as kids who hear. They will be eventually mainstreamed and be normal happy teenage kids. That is what they want you to believe.
Last night we went to a meeting where we learned that the truth is not just different, but it is scary. A high percentage of kids who "graduate" from the oral and mainstreaming program read on a 4th grade level. A low percentage of them graduate, and an even lower percentage go on to college. Deaf kids who do go through mainstreaming aren't accepted. It's just the opposite. Instead of finding themselves accepted in the normal system, they are isolated as the only deaf child in the school. They are kept from participating in normal activities like sports or spelling bees. They are encouraged to take classes that will help them "graduate", but are not academic enough to help them get into college. An email was shown last night that showed how the administration of USDB in 2005 felt about their deaf students being encouraged to go to college. Basically, that kind of activity was referred to as giving the students "more false hopes". The person who was going to encourage these kids to enroll and apply at the U of U was told to give the deaf students "a good dose of reality, and not sugar coat it." If the statistics and attitudes that were shared last night were happening in a "normal" school district, it would make the news, parents would be up in arms. Yet here it is happening, and no one seems to notice. Why? Because what better can we really expect for the deaf kids? They don't really expect to go on to college, do they?
I expect my kids to go. I am ready to do everything I can to make that happen. My first thought was to move away, someplace like Texas, or Washington, D.C., where there is a strong Deaf community. Where my kids could go to school and get the education they deserve. But if everyone who felt that way moved away from here, who would stay and fight? No one. The USDB would win, and oralism would be the only way here. We decided we will stay and take up the fight. To make our kids' lives better, and make the lives of others better.
So, what is a better way? It's not hard to figure out, I think. The same way that hearing kids are taught, should be the same way that deaf kids are taught. Hearing kids go to school and communicate with their friends and their teachers in their native language. Most of the time, there is no interpreter, because the communication is direct. Deaf kids deserve the same. An all signing atmosphere for school. The communication would be direct. They wouldn't have to struggle to try to listen and read lips. They wouldn't miss vital parts of lessons because the interpretation was unclear. It would be direct. They would be surrounded by positive role models who are like them, who can set good examples for them. They would be surrounded by friends who are like them, and they would all be signing. It would be like any other school. They wouldn't feel ashamed or discouraged because of how they are different. They would be accepted. This would be good for building support for the future, building a community, based on common, positive experiences. I believe their test scores would go up, they would be better able to read and better prepared to go into college. They would be surrounded by adults, who believed and expected them to succeed, instead of knowing they would fail. Imagine the power we would be giving our kids, as they learned to love who they are, and have pride in who they are, instead of always focusing on what they are not.
If we don't speak out, then who will? The USDB will continue on like it has been doing for years. But if we come together and say that what they have been doing is not good enough, and our kids deserve better, if we demand that, how will they be able to deny it? We have that opportunity next week. On Thursday, November 12, at 6:30 at the Sanderson center, there is a Town Hall meeting with the new Superintendent of USDB. We need to be there to make our voices heard, to demand that they do what is right for our kids, which is educate them and prepare them for college.

No We Didn't Forget the Time Change

2009-11-02T21:33:00.000-08:00

I imagine if anyone in our court saw us leaving before ten on Sunday, they probably thought, "How embarassing, the Dietz family forgot to set their clocks back." Truth is, we didn't forget at all. We were leaving just when we intended to. This last week we went to the LDS Deaf ward near our house. We were hoping it would be a good experience for Johnny to be around a lot of other people who sign, so he wouldn't feel like he was so different from everyone else.

It was amazing to see the difference it made for Johnny. He just sat and watched all the signing around him. He was just glued to the front. I mean, he didn't pay attention the whole time, but he didn't try to escape, he didn't scream, he didn't hit Eliza, it was amazing. He was still a two year old, but he was as reverent as any two year old I had ever seen.

After sacrament meeting the Bishop came over and said hi. I had met him a couple of days before at work, and told him we would be coming to the ward. He wanted to meet my two kids. The whole ward was so kind and welcoming. Even though my wife and I are still learning ASL, everyone mad an effort to make us feel welcome. It was great. Johnny seemed to do well in Nursery, and Erica and I were able to sit through all three meetings in church. It was pretty cool. We are not sure where to go from here. Going to the ward would be a good opportunity for us to be immersed more in the culture, which will help us as Johnny and Eliza grow. Plus they will have the opportunity to grow up in a ward setting where they are normal, which would be a huge deal for any kid. However, it would be a big change for us. However, well, I guess we'll see what the Lord wants for us.

Finding a Place for Johnny

2009-10-07T22:24:00.000-07:00

We have been starting the long Pre-School Journey. The Journey to find the right pre-school for Johnny. It has been long and hard. A few weeks ago we visited the oral and total communication classes. We didn't feel like Johnny was very comfortable there. The first class we went to, the teacher kept talking to Johnny and asking him if he wanted to color a fish. Then she kept wanting him to say "fish" and Johnny just stared at her. It was like that in most of the classes. Johnny just didn't get engaged in the classes, he didn't know what was going on. There is a lot of pressure when your child has a cochlear implant to abandon all signing, and only do oral communication. Johnny is not ready for that. I don't know if he ever will be. When we done with our visits at the oral and TC classes, we were more nervous than ever about what it was going to be like when Johnny started pre-school.

Today, we went to the signing pre-school, called JMS. We walked into the classroom, and something really cool happened. The teacher was signing a story and invited Johnny to come over and sit on the floor with the rest of the class. Johnny went right over and sat on the floor. As the teacher signed the story, Johnny looked back at us with a surprised smile on his face. He thought it was pretty cool. After the story, Johnny joined the class at the tables where they colored a tree and stamped on some apples. Johnny really enjoyed it a lot. He thought the stamps were cool. After that they had a couple of apple peeler/core removers. The teacher demonstrated how it worked, then helped each of the students do it. It was all visual, all hands on. Johnny was engaged almost the whole time. We were in the class for an hour, which was way longer than Johnny wanted to stay in the other classes. In fact, when we needed to go, Johnny wanted to stay and play. We told him it was time to go, and he just signed "no!" and tried to ignore us. Then one of the teachers thought maybe he would want to go if he thought we were going to leave him there, so she told him we were leaving. He just waved bye to us, and went back to playing. That was a great sign that he felt comfortable there.

Through this whole process we have learned that the most important thing to consider in all of this choosing, is the child, and their needs. Johnny needs the signing, visual atmosphere right now. That's where we feel he needs to be. I don't know if the state will agree, but we are going to fight for it. When it comes to what's best for my kids, I won't back down.

Why I don't like Alexander Graham Bell

2009-09-24T08:00:00.000-07:00

I understand that Alexander Graham Bell might be very familiar historical figure. I understand that the invention of the tlephone is one of the greratest inventions of all time. On the surface, Bell might be a hero. However, I have some issues with the man, and what he believed, and how those beliefs affect people, namely my kids, today.
First of all, Bell believed in the theory of Eugenics. I have a real problem with that. For people who do not know, Eugenics was a progressive movement in the early 1900's, which followed Darwin's theory of survival of the fittest to its logical conclusion in society. Progressives wanted to make society a better place, and felt that the government was the way to do that. One way to make society better was to eliminate certain aspects of society, like disease, retardation, blindness, deafness, or anything that could be considered a disability. Bell was a supporter of this idea. Many eugenisists, including Bell, felt that one way to eradicate these portions of society was to prevent them from reproducing. Bell strongly felt that this should apply to deaf people. If both members of a couple were deaf from birth, then they should not marry or reproduce because this would lead to more deaf babies. Laws, like this were passed in many states during that time to prevent certain populations from marrying. Some people were even encouraged to voluntarily become sterile. Eugenics had many supporters during this time, and was quite prominent in the United States. Only after Hitler and the National Socialist Party of Germany adopted the theory of Eugenics to justify the murder of millions of people, did it become unpopular in the United States. This idea of Eugenics is what led Bell into his life's passion and work.
That work was the oral education of deaf children. Along with being a eugenicist, Bell was also a Nationalist. Nationalism at this time meant a great fear for outside groups and cultures. Bell felt that the Deaf community fell under this umbrella, since they had their own language and culture. He felt that it would be important for them to abandon their language and culture, which seperated them from society. He came up with techniques and ways for deaf people to learn how to speak, and therefore become part of mainstream society. This new idea became very popular, and soon many deaf schools, that had previously taught ASL, switched to this new method. It was taught to students in very ruthless ways, where they were harshly punished for using their hands in communication at all. The goal was to eventually eliminate ASL all together, and only have oral deaf people in this country, until the actual goal was realized where deaf people were eliminated all together, and society would be wonderful and hearing.
Fortunately, students at these schools secretly taught each other ASL and deaf culture survived and was strengthened.
So what is the problem with oral communication for deaf people? For me, part of the problem is that it teaches deaf kids that there is something wrong with them, that needs to be fixed. On their own, they will never be happy or successful, or part of society, or any of that. When a child who is deaf is raised to be only oral, then he is constantly at odds with himself, about who he is and what his value is. His self worth takes a huge blow. Another part of the problem is that it is a hard way for deaf kids to communicate. Yes, there are cochlear implants and hearing aids, but it still takes a lot of effort. Communication is hard enough, without added complications. ASL is a beautiful language that enables deaf people to communicate freely and openly, or anyone who learns the language.
Now, my son is deaf. He has a cochlear implant, which means people automatically assume that we want an oral only lifestyle for our son. This is not correct. We see the implant as a tool for him to use to help him along the way. The harsh reality is that no one in our family is deaf besides our kids, so no one signs except for us, and one aunt. This is ok. It's the reality of the situation. We want to give Johnny the tools for communication in all aspects of his life, which includes his family. However, we will not force him to give up sign, or even encourage it. I have seen my son come alive through sign language. It is his first language, and I will not take it away from him. I do not believe that encouraging him to sign or to participate in the deaf community is going to hinder him. On the contrary, it will give him strength. I do not look at other kids who have cochlear implants who talk and listen only in the auditory world, and say to myself, "Finally I see that my son can have a happy, productive life." No! I see that as only one aspect of my child's life. I always believed that he would have a happy productive life, with or without hearing. I hope as he gets older, he is proud of who he is, and accepts himself, and does not view himself at all with shame. His success is not attached to the implant in his head. I want him to think, I am happy and productive, not despite being deaf, but because I am Deaf.
I hope the deaf community will accept him, despite his implant. We did not do it because we are ashamed of our son or because we did not think he could succeed without it. We did it to give him another tool to help him communicsate with others. The hearing world will not ever bridge that gap, so my son had to sacrifice to bridge it. Maybe this is wrong, but it's what I think.

Monthly Update

2009-09-21T21:14:00.000-07:00

School has started for me, and that is why there has been such a long break in between blog posts. I wanted to take a few minutes to update everyone on everything that is going on in our lives, because life does not stand still!

Johnny is making great strides with both the implant as well as signing. He has started to imitate more sounds that he hears, including fire engines and the word "bye". He has also started to turn when we call his name, which is pretty cool.

Even cooler has been the increase in proficiency we have seen in his signing. He is starting to link bunches of words together to make sentences. Sometimes he will sign things so fast, I am not sure what he is signing. His favorite sign is Firefighter, since that is his current obsession. Today, we went to Erica's parents' house for a western night. They had a fire going, and as everyone was kind of leaving, and the fire was dying, Johnny waved his hand to get my attention and then signed fire, Firefighter, then water, and made the action of spraying water on the fire. Apparently, he wanted the fire department to come and put out the fire. It is amazing to me that he can put that all together. He has also begun to master the art of talking back in his signing, like when we tell him it is time for bed, or time to change his diaper. He is very good at signing no and shaking his head, then he looks anywhere, except at us. I would get angry, if it weren't so cute!

Johnny has also been enjoying the football season. I got him a little football outfit, that he wore for five days straight. I also took him to the first Utah home game, and he loved it. Now, every once in a while, you will find him getting down in his stance, and then jump up and run, sometimes he just runs, and sometimes he will run at me to tackle me. It is awesome. I think he is going to be a linebacker someday. Who knows?

Eliza is beginning to make more sounds as well. She just turned one on September 8, and it has been incredible to see how much of a little personality she has been developing. She smiles and laughs all the time. Her favorite game is to find a piece of clothing and drape it over her head and then walk around with it on up there. It's just about the cutest thing I have ever seen. She has begun to mimic more of the gestures she sees. Tonight at dinner, I signed eat to her, and so she moved her hand up to her mouth, copying me. Her favorite sign is what. She walks around all day doing that sign, nonstop. I think she must see us do it all the time, either that, or she really just wants to know what everything is.

Erica is doing well. We are getting more and more excited about our next little one on the way. At first it was a shock, but now we are just excited. Boy or girl, this little baby is coming to a great family, with awesome older sibling to show him or her the ropes.

The Cabin and Eliza's New Tricks and Other Big News

2009-08-19T22:03:00.000-07:00

This last weekend was a lot of fun. We went up to a cabin in Huntsville, UT. Johnny loved it there. He saw horses and water and fire and ate s'mores and hot dogs and chips, it was a dream trip for him.

We got there on Friday afternoon and moved our stuff into one of the bedrooms then we went for a little walk to the barn that they had on the property. On the way there was a little stream that went through the property, and Johnny had fun just throwing rocks into it. He didn't want to leave it. Then we took him across the street so he could see some horses, which he liked as long as we kept our distance from them.

That night, we built a fire in the backyard and had an old fashioned wienie roast. It was delicious. Then we roasted marshmallows and had s'mores. Johnny liked that as well. The next day, it was kind of rainy in the morning, which disappointed us because we had planned to go canoeing that afternoon. In the morning we went over to David O. McKay's childhood home. We signed to Johnny that it was a prophet's house, and he thought that was really cool. He has been obsessed with prophets lately, so it was really neat.

After lunch on Saturday, it cleared up quite a bit, and we were able to go canoeing. We drove down to a little reservoir and took the canoe and kayak down to the water

and everyone took turns going out in the water. Johnny loved being on the canoe with us. He thought it was great because he was on a boat on the water. He was mad when we had to leave.

We left the next day after church, and after we almost caught the cabin on fire when we cooked some pizza. All in all it was a great little getaway.

Now for Eliza's new tricks. She has been spending more and more time on two feet instead of on all fours. She has even started taking steps. Today, while I was at work, she walked across the living room. It is amazing to watch her. She'll be sitting on the floor, then she'll get herself up and start walking, just like that. Pretty soon she is going to be chasing Johnny

down the hall. It is funny to watch her, she always gets so proud of herself when she walks, and looks around, and waits for us to clap for her, and then she claps for herself. It's fun.

The last part is our big news. We are excited to announce that our little family of four will soon be a family of five. It is a little sooner than expected, but we are excited nonetheless about the addition of another baby to our family.

Wonder Woman

2009-08-11T22:06:00.000-07:00

When I was younger, there was only one thing I really wanted to be: Superman. Unfortunately, I can't fly, I don't have super strength, and I've never tried, but I'm pretty sure I'm not bulletproof. Not to mention my physique, which is not exactly super. Maybe I didn't grow up to be Superman, but I got close, because I married Wonder Woman. For those of you who read this and know Erica, you know what I'm talking about, or you at least have an idea. For those of you who don't know Erica, you're missing out.

Why is Erica so awesome? Where do I start? The world has it's own ideas about what makes a "wonder woman". This is a picture of perfection- the ultimate career woman who is also the ultimate soccer mom, who also keeps a perfect house, whose kids are just perfect, and through all of this her make up stays perfect and not a hair is out of place. This is not reality. The sad thing is that the world is missing out because the reality is so much better.

Erica does not have a career. She gave that up, by choice for her kids. Our house may not always be perfect, and neither are our kids. My wife doesn't have to worry about her make up smearing, because she is more beautiful without it, than she ever could be with, and fortunately for her, her hair looks great no matter what. So apparently. she does not fir the world's perception of perfection.

Let me tell what she does do. Last year, our world changed forever. In some ways we were planning on this, since we were expecting another child, which always changes things. What we were not planning on was being catapulted into a whole new cultural world. Our world was broadened and changed when we found out that Eliza was moderately deaf, and then a couple of months later, we found out Johnny was profoundly deaf. Erica, up to this point had no experience with deaf kids. She did not know a lick of sign language. She knew nothing about deaf culture, and had never imagined raising a deaf child, let alone two. This could have been enough for anyone to start questioning why things happen the way they do. As much as i would like to deny it, it was easy at first to see this as a trial and a challenge, a tragedy. Erica never did. She knew it would be hard, but she knew that raising kids would be hard. She seemed to realize from the beginning that this was not a tragedy, but a blessing. Through it, she has brought our family closer together, and has had nothing but love for our kids all the time. She has loved them unconditionally. How fortunate my kids are to have her as a mother, someone who will help them find strength in who they are, focus on being able, not disabled. She has grounded me in the knowledge that our kids are the most wonderful kids in the world. It has gotten to the point that we would be a little disappointed if our next kid was not deaf.

Besides all of this, Erica has been a wonderful mother. Our house may not be perfect, because Erica puts a priority on spending her time with the kids. She seeks out different activities to help the kids experience new and different things. She has shown me nothing but love, and has made my life worth living. She is always willing to pull me back down when need be and help me stay grounded, whether that is financially or whatever.

Erica is one of my heroes, and right now, I feel like she needs to now that, and I want others to know that. Sometimes, we get to caught up in what we are not doing right, and miss all the things that we do really well. I don't want this to be the case for Erica, because she does so many things, so well. I love her, and I look forward to our eternity together.

The Incident

2009-07-27T19:22:00.000-07:00

I thought a lot about what to write for this post before I wrote it. Last night we had an "incident". Johnny has a hard time getting along with other kids. When he is left alone he is a sweet little boy, but often times when he is around other little kids he gets frustrated. We have seen that a lot. I think it comes from the inability to communicate. Johnny only knows sign at this point, and only on a basic level. The other little kids in our apartment complex only know english, and again on a very basic level. This leads to frustration, them with Johnny and vice versa. When Johnny gets frustrated, he usually hits the other children, to get their attention or to get them to stop, or to get them to go away. He doesn't know any other way to get his message across. We realize as parents that this is no good. We have tried to teach him not to do it, and in some ways he has gotten better the more he signs. However, there are times when he still gets so frustrated he can't help it. We try to be there to prevent those times from happening, but we are not perfect.

This brings us to the "incident". Last night Johnny was playing in a little police car outside. We were watching him, and he drove a little distance away from us. We were not too concerned because there weren't any other kids near him. We were sitting with some friends and were engaged in conversation with them. We kept looking back to keep an eye on Johnny. During one of the times that neither of us were watching, Johnny had been approached by a little girl in our ward. I don't know what happened, but the next thing we know, all the other little kids are running to this little girl's mom, many of them yelling that some little kid did it. We all looked to see what it was, and this little girl was bleeding from her nose. One of the other parents, who is not related to this little girl, came storming over to me, and said "Hey, your kid just grabbed some little girl's nose and made it bleed!" I got sick to my stomach. Then I got angry at this person, because his next words were taunting as he said "Yeah, see that girl over there, your kid did that, see what your kid did?!" I immediately ran over and took Johnny inside. As best I could, I tried to explain to him in my broken sign that hurting other kids was bad, and that he would have to go to bed now as a punishment. He cried for a while. I don't know how much he got from what I told him. Erica talked with the mom of the little girl. We felt, and still feel terrible about what happened. The mom was great. She was not angry with us, and explained to Erica that her little girl's nose bleeds pretty easily, and that it was not a big deal. Johnny's behavior still was not appropriate, and we are working so hard to get it right and to teach him.

I think that is what bothered me the most about what the other parent said. He has no idea what it's like. I don't blame him. How could he know that we had just had a long talk that day about things we needed to start doing to break Johnny of his hitting habit? How could he know that his comments were going to make my wife cry herself to sleep that night, and make me feel like a failure as a father? He probably thought that he was being some kind of hero, standing up for all the little kids on the playground and protecting them from the beastly Dietz child who never listens when the other parents ask him to stop. He probably didn't even know Johnny was deaf. I still wanted to ask him, though, to see how he would do raising two deaf children. Now it's hard to raise kids no matter what, but when one of his kids hits someone else, he can pull that child aside and talk to them about it. We try, but we just don't have the words. We're trying to learn them, but they're not there yet. We know that this kind of behavior is unacceptable, and we don't model it at home, but I honestly don't think Johnny is doing it to be mean. maybe I'm wrong. maybe my child is the monster this guy obviously thinks he is, and maybe we are awful parents who simply just don't care, like he must think we are. But I get so worried when Johnny does that stuff. I hate it when it happens, and I don't want him to do it, so I must care a little bit. And I've seen Johnny with his sister and other little babies and how he will softly try to hug them and give them kisses, how he signs words to teach Liza how to talk, and i know he is not a monster. I see how when he sees the other little boys playing with trains or super heroes, he gets his trains and super heroes. He just wants to be like the other kids, but he doesn't know how. We are trying to teach him, and I am sure he will eventually grow out of it, I just hope we can help him do it quickly.

Growing Up Some More

2009-07-21T08:35:00.000-07:00

It's been a little while since I've written. I thought I should give an update on Johnny's progress as well as Eliza. This time I am going to start with Eliza. She is getting to be such a big girl. She has started to stand all the time, and has even begun to let go of things, and goin' freestyle. She has also begun to climb on things and over things and under things. She is getting to brave, I think, but maybe it is just hard to see her grow up so fast. I miss the days when she was a newborn and I got to hold her, and she was so little. Now she is so independent (she learned that from Johnny), she hardly ever wants to be held. She has begun using some more signs. Here is a list of the signs she has done to some extent or another: Mom, dad, more, milk, horse, airplane, and hat. She is also understanding more sign, which is just so cool. I swear she knows bedtime, because she gets mad every time we sign it to her. She also learned that from Johnny. She has also learned to make the ahhh noise when we practice with Johnny. Unfortunately for Erica, she has just entered a very mommy clingy stage. Erica loves it.

It seems like the longer Johnny has had the processor on, the more he signs. He is picking up signing like crazy, and not just words anymore, but whole sentences. It is so much fun to watch. He signs to us, to other people, to Eliza. The last one is really cute, because he will show her a picture of something and then sign it to her and sometimes he will help her to sign it. It is awesome. He has also started signing when he plays and sometimes he just signs to himself. It has really become a great language for him, and I think it will remain his first choice. He has also done really well with sounds. He has begun mimicking the sounds he hears us practice with him all the time. We talk to him all the time, but mainly he responds to our signing. He is so smart, just unbelievable what he can do.

What Johnny Heard

2009-07-12T08:44:00.000-07:00

The title might be a little misleading. I don't really know what Johnny has heard this week. This is what I do know: Johnny heard something. We have seen some responses as he has been wearing his processor, but obviously there is still progress to be made and work to be done. Today, for the first time, we were making one of THE sounds, and Johnny began imitating it, so I know he heard that. It will be a long road to him speaking and listening.

It has been interesting to hear and see people's responses. Going into a store the other day, I noticed a man staring at it. Not just a curious look, or double take, but staring, with a look of bewilderment on his face. I thought, "what, you've never seen a kid with a cochlear implant before?" Then I thought, I really hadn't before we found out about Johnny and Eliza, so he probably hadn't either.

Most people that we have talked to have asked if it has just been amazing to see him respond to all the sounds. Our family is excluded here, because we prepared them for the reality. People think it is like wearing glasses. You put them on, and you can see. It is completely different with the cochlear implant. Johnny has to learn how to hear and listen now, and it will take a lot of hard work. So the answer is, it hasn't been much different yet. It will be amazing over time, but not just yet.

The one thing that has come out of it has been the opportunity to explain to people our thoughts on the whole kids being deaf thing. A lot of people assumed, in the hearing world, that we were doing this to fix our kids, so they wouldn't have a tragic life where they missed out on all the wonderful sounds around them. It has been a great opportunity to explain that our kids being deaf was never a tragedy. It may have been a comedy at times, or a drama, but never a tragedy.. Tragedies always have unhappy endings, and that wasn't ever going to our kids' lives. Johnny is 2 and a half years old. He is healthy and happy. He talks a lot (using his hands), he loves Batman and all things super hero, he loves trains and cars and frogs and bugs and dogs. He loves his little sister, sometimes too much. He knows who Jesus is, and he loves Him. He loves mom and dad, his grandmas and grandpas. Where's the tragedy? He is just like any other kid. We did not get him the implant to fix him, to make him just like everyone else. We didn't get him one because we felt like he was missing out on life. He wasn't. He is an incredible little boy, who can do so much, with or without the implant. We got the implant, not for him, but for others. To help others get over the communication barrier with him. My wife and I are learning sign, and teaching it to him, and he is amazing at it. That will always be his language of choice, I think. He will never have to work at signing as hard as he will at listening and talking. The reality is that the rest of the world will not cater to him. The implant is just a tool for him to communicate with others, make his life a little easier. It is not what is going to make his life complete, because it wasn't missing anything.

Activation Day

2009-07-06T20:59:00.000-07:00

Today was the big day, Johnny's activation. I had been having mixed feelings about it all. I wasn't sure that all of this was really necessary, did Johnny really need this implant? Then I had thoughts about whether this was really going to work. When we first found out about Eliza's hearing loss, and realized that Johnny probably had it too, we thought his would be the same as hears, in the mild to moderate range. It was hard when we found out it was severe to profound. Then we got our hope up that hearing aids would work, but they didn't, at all. So, I was afraid to get my hopes up this time.

When the audiologist hooked up the processor, and after the boring testing of the electrodes, and we saw Johnny react to sounds for the first time, it was a magical moment. I couldn't believe it. It was working, no letdown. Then it was time to leave to office. We had the map set on his processor, and the battery pack was hooked up, so we turned it on and then put it on his head. The magic was over. He began to cry a lot. He just wouldn't be comforted. No one had really prepared us for that reaction. I felt like the worst parent, like I had taken something away from him, when I thought I was giving him something. I promised myself that I would not let him lose that part of himself that was attached to his deafness. We'll keep working on that.

The rest of the day went better. He kept the processor on for most of the day. We went first to my mom's house, where his grandma showed him the wind chimes outside, and he discovered that they were more than just decorations, they made sounds, and he was amazed. After that, we rode the train downtown and went to the LDS Church museum to explore the Primary display upstairs. Johnny loved it, there was a lot for him to see and do. He had a lot

of fun there. After that, we went across the street to Temple square to go see the Christus statue. Johnny has really been into pictures of Jesus lately, so we thought he would enjoy that, and he did.

After that we went downstairs to see the display on the Book of Mormon and modern Prophets. Erica needed to nurse Eliza, so she took her into the bathroom and fed her. Johnny and I went over to the display featuring President Monson. It had clips from different talks on different topics. I found one on Jesus Christ and pushed play. Then I sat on the floor next to the stroller and watched as Johnny signed "prophet" and pointed to the video image. Then he stopped as President Monson started speaking. Johnny turned his head a little and just watched, and listened as the prophet spoke. For the first time of the day, I got a little emotional as I watched my son listen to the Prophet for the first time.

After we were done downtown we took the train back to Murray, and then went to my dad's house. Everyone was excited to see Johnny, but he did not like hearing everyone. We had a harder time getting him to keep it on there.

When we got home, I got Johnny ready for bed and got my favorite book from when I was a kid, "But No Elephants", and read to Johnny with the implant in. I signed most of it still to him, but I sat with my mouth close to his mic and spoke the story to him in different voices, and he smiled a lot and really enjoyed it. That was the moment when I promised myself that I would work with Johnny to develop his listening and oral skills. I want my son to enjoy all of life that he can, and today was a big step toward that.

3 Down, 1 to go

2009-06-30T21:30:00.000-07:00

Well, we have less than a week until Johnny's activation. We are excited and nervous. I don't know how Johnny will react, so it will be interesting to see. I think it might bug him for a while because he is one who doesn't always like change. At the same time, he always adapts very well and quickly.

In my ASL class we watched a movie about two families, one that was Deaf, with deaf children, and one that was hearing with a deaf child. We watched as the two interacted with each other, and in not the most friendly ways. As I was watching it, I wondered what it would have been like to be one of the other students watching the film. For them it was just an interesting movie in class. For me it was real life. My wife and I had gone through all of this, and had to make this decision, and had to wonder if it was the right decision. I think about it all the time. How is Johnny going to feel about his implant when he gets older? Will he appreciate what we were trying to do in giving him as much opportunity as we could? Or will he resent us for forcing an implant on him? The family in the movie who got the implant, the dad said he stood behind his decision 1000 per cent, and called his brother (the dad in the other family) criminal for not doing it to his children. I guess at this point, all I can say is that I hope we made the right decision. I hope Johnny will find a way to live and thrive in both worlds. I hope he will find a way to function in the hearing world, without losing his deaf identity. I hope he comes to appreciate the culture he was born into, one that his mom and I knew nothing about. I hope it all just works out for the best. I just hope, no matter what, he grows up to realize his full potential, that he grows up to be a leader and an example to those around him. That has nothing to do with him being deaf or hearing. It just had to do with him being my son.

Liza's Signs

2009-06-22T22:01:00.000-07:00

We've noticed that Liza is really beginning to sign more and more. My favorite is when she sees me in the morning or when I come home from work, she signs Daddy. I love it. We have also been working with her to sign milk. Usually, she tries to just go for it when we tell her to sign it, but more frequently she signs it now.

Earlier today we went to the library, and Eliza was just watching Johnny and us sign, and was trying to sign everything she saw. Johnny saw an alligator on a table and signed it to me. Eliza saw that and laughed as she signed it over and over again. I don't think she knows what all of those signs mean, but she knows that in our family, that is a way that we communicate.

She is growing so fast. She went to the doctor's today, and she is growing. The doctor said that one of the things we should be seeing her do in the next couple of weeks is crawling. Erica just informed him that she has been doing that for weeks. He said the next thing that she will probably be doing by the next appointment is pulling herself up on things. Erica let him know that she already does that too. Apparently, our child is gifted and advanced for her age. How many other 9 month olds out there crawl, pull themselves up on things, and talk? Ok, I'm sure there are plenty out there, but we like to think that our Liza is pretty special.

2 Down, 2 To Go

2009-06-22T21:38:00.000-07:00

Well, we are at the midway point between Johnny's surgery, and his activation date. It has been an interesting time for us. We feel like we have really done a lot to help people become aware of cochlear implants and how they work. Johnny's scar has drawn a lot of attention, which always leads to questions. We are always glad to explain.

Johnny is picking up signs like a sponge. He has started watching what we sign to him and copying it, including finger spelling. Granted, he doesn't really finger spell, but he tries. He knows so many words, it is hard for us to keep up with him. This week, we have been working with him on the concept of "help". He still doesn't ask for it when he needs it, only when we remind him to.

His favorite new sign is sad. Whenever we see some one who is crying, he signs sad. The other day, we were watching the Superman movie, and we got to the part where Lois Lane dies, just before Superman flies really fast, causing time to go backwards (if you haven't seen the movie, excuse my nerdiness). Johnny saw Superman holding Lois Lane, crying, and he turned to me and signed sad. It was really cute. Turns out, Superman movies are a great way to teach the concept of help. Every time someone was in trouble, I would sign to Johnny that they needed help, and then Superman came and helped them. Pretty soon, Johnny was signing to me that the people needed help. I think he was really beginning to understand.

I hope, as we get the implant activated, that Johnny will learn spoken words quickly, and will continue to learn signs, as quickly as he has been. I think that no matter how well Johnny learns to talk, his first choice will always be signing, and we don't want to discourage that. We want him to be comfortable expressing himself in his language of choice. That's why we want to learn sign language, so he always has that choice.

Parents Decide

2009-06-19T22:07:00.000-07:00

Recently, I've been hearing of things that are a little troubling as a parent. There are those out there who are trying to change, things and not for the better. I am wary of any person or group who tries to tell me that there is one size fits all approach to children who are deaf or hearing impaired. I am also wary of anyone who tries to tell me that my children can be "fixed", like their broken. My kids aren't broken, they are perfect just the way they are. I want to give them tools to communicate and be successful, but I always want them to be proud of who they are.

I know there are groups out there who are working to take away our choices as parents to decide what is best for our kids. Nowadays, there are so many choices for kids with hearing loss or who are deaf, that we should be able to study them out, and decide for ourselves, and professionals and PIP workers should support us in that. I am grateful that this has been our experience thus far. We have shared with our PIP advisor what we have decided, and she has supported us on that. However there are groups who claim that PIP is too one sided. In reality, I think they feel that PIP should not offer any other option but the one they have chosen, whether that be signing or oral or somewhere in between. These same groups are working hard to make sure that they bring about these changes. Everyone I have ever talked to in PIP has said that it's the parents' choice how to raise their kids, and they are there as support. That is how it should be. If these groups who want to change things by writing letters and going before boards are successful, our right to choose will be taken away. I hope parents will be aware of this and make it clear that all we want is options, and the support to accomplish the goals we set for our kids. I hope the day will not ever come that my freedom to choose will be taken away.

Now, those who are supportive of these groups, I believe are really doing what they feel is best for themselves and others.

I am also just trying to do what I feel is best for my kids and others. I want there to be choice, I want to have the right to choose for my kids, and I want my neighbor to have the same choice. If you choose oral communication only, or if you choose signing only, or a mixture of both, make it the right choice for you and your family.

Johnny Goes to University

2009-06-19T18:52:00.000-07:00

Yesterday, I brought Johnny to my ASL class at the University. It was the last day of actual class before the final, and our teacher wanted us to each to bring a show and tell item and describe it to the class using sign language. I brought Johnny because I thought the other students would think he was cute, and I love showing off how smart he is. What I didn't expect was how much Johnny enjoyed the class. He thought it was so cool that everyone was talking the way he does, like he was normal.

He spent the time before our turn going back and forth between two different chairs and playing with his little super hero toys. He also would sign all the things that the others brought to class. He was really interested in what was going on.

Then it was our turn to go. He walked right up to the front of the class. I signed for him to sit in a chair and he moved over by the table where he had his back pack and sat down and just looked around and smiled. I wanted him to try and sign somethings to the class, but he was being shy and didn't want to. When our turn was over, he moved the chair back to the corner at the front of the class, and then he went back to where we had been sitting and got the rest of his toys and signed that he was ready to go to the car. It was really cute. Everyone was really impressed with him and how smart he was. I am just amazed with how smart he is. I am so proud of him.

Earlier in the day we brought Johnny to the city library in Salt Lake City. He loved it. The children's part was in the basement. They had different rooms to play in, and one was the crystal cave. He had on his Superman cape that Erica had made for him, and had just watched Superman II in the morning. We thought it was pretty cool, because the crystal cave room looked a lot like Superman's Fortress of Solitude, so we got a picture of our little Superman in his Fortress of Solitude.

1 Week Down, 3 to Go

2009-06-16T06:30:00.000-07:00

It was just a little over a week ago that Johnny had his surgery done, and he is looking good. He is running around and playing like he always did. We are amazed at how good the scar looks on his head. It is really healing up nicely, and now that the hair has started to grow to cover it, you almost have to really look to see it.

Yesterday he went with Erica to the dinosaur museum at Thanksgiving Point. She wanted to take him because lately he has been really into dinosaurs, and she thought he would be excited about it. She was right, I guess as they came around the corner and saw the first dinosaur he started jumping up and down and getting excited. He enjoyed the outing very much.

His newest thing is being addicted to chocolate milk. He was already addicted to regular milk, but last week we bought some premade chocolate milk, and he loved it. Now he won't have his milk any other way. He also loves hot chocolate, so when we were out of the chocolate milk, Erica would make him the hot chocolate, which he began signing when he wanted to drink by signing hot, then chocolate. Last night we went to the store and got him some mix for chocolate milk, since that is easier than making hot chocolate all the time, and he likes it just fine.

I am amazed at my little boy. To be his old happy self again, this soon after surgery amazes me. He has bounced back so well. He still remembers the surgery, I think, but he has moved on. I know he doesn't know the impact it will have, but in just three weeks, he will, and hopefully he'll eventually understand why we put him through all of this.

Not so Little Liza

2009-06-15T17:00:00.000-07:00

Eliza went in last Thursday for an evaluation at the audiologist. Her hearing is about the same as it has been, which means that the hearing aids are still working for her. We were beginning to get a little worried that her hearing loss had increased because she doesn't seem to making all the sounds she should at this age. It's kind of a frustrating thing. These professionals decide where your child should be based on averages and what not, when in reality, every child is different. Maybe we just worry more because of the progressive hearing loss that both our kids have.

The last little while I have been amazed at the amount that Eliza has grown. All of a sudden she has her own little personality, she is becoming more and more a little girl instead of a baby. One way that this is apparent is in her first signs. Recently she began signing a few things, and it is so cute. She signs milk and reaches for mommy when she is hungry. When I come home from work, she signs daddy by smacking the side of her head, it is so funny. She will also sign more by clapping her hands together. I am amazed at how she has quickly picked these up. I don't think she totally knows what they mean, but it is still cute.

She is crawling all over the place and has begun pulling herself up on things to stand. Just last week she started letting go of things and trying to free-stand. This usually only lasts a couple of seconds, and then she falls.

My little Liza is not so little anymore, but fortunately for us, she is still pretty cute.

Deaf for a Day, Lesson for Life

2009-06-13T19:00:00.000-07:00

I am currently taking ASL 1010 in school right now. I figured that I needed the language credits for my degree, and this was the most useful language to take right now in my life. Part of the course requirements is that we need to spend one whole day (at least eight hours) being deaf. This meant no listening to music in the car, not listening to sound on the TV, no talking at all. All of our communication had to be through the sign language that we had learned. I decided to do this today, forgetting that we had a church activity in the afternoon. When I remembered that, my wife asked if I would want to do it on another day. I thought about that, and then realized Johnny and Eliza do not get to pick which days are convenient for them. They go to every church activity, family get together, party, whatever as deaf people. This would be a good experience in trying to communicate with the hearing world while deaf.

It was hard. I felt like I was not really part of the activity because I couldn't really communicate with anyone. Erica served as an interpreter, but sometimes she did not know what I was trying to sign, and I did not know hoe to better communicate it. I felt like people were kind of just avoiding me, not on purpose, but just because the whole situation was awkward. These people are normally my friends, but they couldn't talk to me, so they didn't. After a while, I just followed Johnny around, and didn't really participate. I wondered if this was how Johnny felt everyday on the playground.

Then I learned a great lesson from him. He spends all day watching the other kids play on the playground and tries to participate with them, and is greatly ignored by them. But he goes out there everyday and tries again anyway. I was reminded of that at the activity, and realized that in a cool way, he had made some friends. There were two other boys at the activity that were a little older than Johnny. One of them kept asking me where Johnny was when he could not find him. Then they played in the drinking fountain, taking turns spraying each other with the water, and laughing the whole time. Then, the three of them found a worm on the ground and laughed as they each tried to pick it, Johnny was the first successful one, and they all laughed. I realized that despite Johnny's differences, he had managed to make friends, and they found a way to laugh and enjoy each other that did not depend on being hearing or deaf. I realized that the limits we saw in Johnny making friends were limits that we put on him, not limits he saw himself. I think he knows that the kids sometimes treat him differently, but maybe on some level he understands why, and somehow he has the patience to wait until they figure out that he is worthwhile to be around.

The Choices We Make

2009-06-11T22:45:00.000-07:00

When we found out about Eliza's hearing loss, and then Johnny's more severe hearing loss, we were unexpectedly launched into a world that we knew nothing about. Immediately people began bombarding us with questions about what we were going to do. Decisions were going to be made over the next little while that would affect our kids' lives forever. It felt like a lot of pressure to make the right choice.

The pressure came from all sides. From things we read online to professors in school to medical professionals. Everyone seemed to have an opinion with points to back them up. It became clear that we were in deep, and that ultimately, it was something we had to decide for us.

When Eliza failed her hearing screening and we learned that her hearing loss was permanent and progressive, we began to wonder about Johnny who was still not talking. Questions were raised about his hearing, and the more we looked at him, the more it became clear that he could not hear. It was at this point that Erica began to learn sign and teach it to Johnny. He picked it up fast, and still learns signs very quickly.

In December, when we took Johnny in for his ABR, we found out his deafness was in the severe to profound range, and that hearing aids would probably not work for him. The audiologist who was performing the testing asked if we would want to do a cochlear implant. We were just trying to accept the fact that our son had already lost pretty much all of his hearing, so we had no idea about cochlear implants. The audiologist then said that if we were considering at all cochlear implantation, then we should stop signing with him, since this would just cause frustration down the road.

Others would tell us that it would be ok to sign a little bit with him, until he got the implant, at which point he would be "cured" and not need to sign. We were continually frustrated by this supposed choice we had to make to do either or. The more we thought about it, the more we thought that we did not want to choose between the two, but to choose both. Our kids would be bilingual and bicultural.

The realities for us were these: Johnny and probably Eliza would be more comfortable signing as their primary mode of communication, and The families they were part of and the kids they would live near and the world outside their home would be an auditory world. We wanted to give Johnny and Eliza every opportunity to communicate that we could. We also did not want our kids to ever feel that they needed to be fixed or cured. We want them to be proud of who they are, and to never feel that there was anything wrong with them. These are the things we considered in making the choice to put Johnny though surgery and to keep teaching him sign language and to learn it ourselves. We understand that this may not be the right choice for everyone. I guess the important thing is to remember that no one is going to know what is best for your kids better than you will, and to have confidence in the choices you do make. The other thing we've learned is that the right choice, whatever it may be, is rarely the easy choice. It is always hard, no matter what you choose.

Update on Johnny

2009-06-10T20:04:00.000-07:00

I just wanted to leave a little post on how Johnny's recovery is going. Saturday was along day, and Johnny was definitely not himself. He just laid there and took it easy. Well, for most of the day. At some point he decided he wanted to start getting up and doing stuff. Johnny just isn't the type to just sit and do nothing. He knows he is missing stuff if he is doing nothing. The problem was he couldn't really walk yet. He would try, but he looked like a little drunken man when he did. He learned that quickly, and mostly just crawled, or would come to us to help him get somewhere.

Sunday he was more like the Johnny we know and love. He was moving better, but this led to more problems, because he wanted to do more, but still was not completely stable, so he made us a nervous wreck. At one point, he and I took a long nap. When he woke up, and then woke me up, he pointed to his head, and then signed "what", asking me what was going on with his head. That broke my heart a little, and I wished I was better with signing so I could explain it better to him. We spent a little time outside on Sunday, which we thought would be a good idea. It just made Johnny want to do more stuff he couldn't, like sliding. The one thing he wanted to do more than anything else was to go down the slide, and that was the one thing it specifically said he could not do on the papers from the doctor. So he was mad.

Monday, he was climbing on stuff and running around and hitting on Eliza. Johnny was back in full force. He still looked a little wobbly when he walked, and we had to help him up and down steps.

Tuesday, he looked normal and we started letting him sleep in his own bed, which was good for us. He did make Erica nervous when he climbed up onto the back of the couch and tried to stand up on it. That would have made her nervous even if he hadn't just had surgery on Friday.

Today, he has made it through most of the day without any pain medicine, and has been running around nonstop. It is amazing how resilient kids are. His scar is starting to look pretty good, which I think is a good sign that everything is healing nicely.

It has been an amazing process, and I look forward to what is yet to come. Johnny is just so smart, and I thing he will figure out talking pretty quick, with work. However, I also think he will always probably prefer signing, which is cool too. That is his first language, and the most natural for him. We don't want him to not be deaf, because that is part of who he is. We also don't want him to not be part of family gatherings and get togethers. We want him to have the best of both worlds, to be bilingual and bicultural. It's not the easiest way, but we feel, for us and our family it is the right choice.

Johnny the Brave

2009-06-07T20:32:00.001-07:00

On Thursday, we went in to see Dr. Shelton for Johnny's pre-op appointment. He went over how the whole procedure was going to go. Johnny had fun while we were waiting for the doctor to come. He would sit on the doctor's chair and would sign for me to sit in the patient chair and then proceed to examine my hand. He seemed to think it looked ok because he would then motion for me to leave. Then I would sit again and the whole thing would be repeated again. Then he wanted to have Eliza sit by him, and he would examine her.

When the doctor came in he

explained how things would proceed the following day. We became nervous when he told us that we would not be in the room when Johnny went under. Instead he would be taken back to the OR doors, and then Johnny would go through the doors and we would go back to the waiting room, until it was done. We were worried about how he would do with that. Then the doctor went ahead and marked Johnny's right ear for the procedure.

The next day we got up bright and early and were at the hospital at 7:15 to check in. We waited in the first waiting room until they called us back. Johnny was sad when we went back because he was having so much fun playing with all the toys. When we went back they took his weight and height then we went in a room and changed him into his hospital pajamas. This was probably the point when Johnny started to realize that this was not a normal doctor's appointment. After a few minutes in that room, we went to a second waiting room with more toys, where we would wait to be taken back to the OR. Johnny was really enjoying himself with all the toys there and they had curious George on, so it was fun. Then the anesthesiologist came in and wal

ked us back to the OR. Johnny rode in the wagon with his Batman pillow. Then we got to the doors and left Johnny with the doctors and went back to the waiting room.

Erica was the first to coback when Johnny was waking up. She said that his face was really swollen, and when she got back there he was rolled up in a ball in his bed crying. I was glad it was her and not me. It was hard when I saw him. He had the dressing wrapped around his head covering his wound and he was out of it. It was really hard to see him like that, and to know it was my choice to have him here and to get this procedure done. I knew before that the cochlear implant would op

en doors for Johnny and enable him to have as many communication tools as possible in his life. I knew that, but it was hard to think about it as a good thin when he was laying in my arms. He never looked mad or sad, just tired.

We brought him home later that day, and it was hard to watch him all day. He was not himself. He just laid on the couch and slept. When he was awake he would just lay there and watch TV. For those of you who know Johnny, you know how out of character that is for him. Later I was up with him and he signed football to me. I gave him a football, and he threw it and began to laugh a little , and it was the first time I saw a glimpse of my Johnny that day. Over the next couple of days, we saw more and more of him come out. Now he is back being himself, except he still can't quite walk straight, so we try to limit his mobility, and he is just bored to tears and wants to get out of the house.

Watching him go through all of this, I realized that my son is a super hero. He is so tough. He has cried and whined so little through all of this. I know this will be a good thing for him, but it does not make me excited for the next one we'll have to go through with Eliza.

Erica

2009-05-10T20:09:00.000-07:00

Today is Mother's Day, so I thought that his would be a perfect time to write about my beautiful bride, and Johnny and Eliza's wonderful mother. I met Erica in September 2005, fresh off her mission to Uruguay. She was shy and quiet, but I knew she was something special. On our second date, I knew we were going to get married. I didn't share that with her, because I didn't want to scare her off, but I was certain. We dated for about a month and a half, then got engaged to be married. Shortly after that, in April of 2006, we got married.

As I got to know Erica, I fell more and more in love with her. One thing that I loved about her was how smart she was. She was way smarter than I was, and still is. We could have great conversations about anything in the world. She was so talented. Erica can really do anything she puts her mind into. The other thing I really loved about her was that she wanted to be a mother, right away. She did not want a career or anything, just to be a mother. For me, that was what I was looking for, that was right for me. That may not be right for everyone, but I was ready for a family right away.

We didn't waste any time. We were married in April and were pregnant by May. I always heard horror stories about how wives could be when they are pregnant. I never experienced it though. There was definitely a difference in her, but it was mostly positive. She just glowed while she was pregnant. I thought she had been beautiful before, but she was beyond beauty while she was pregnant.

In January of 2007, Johnny was born. Erica was so amazingly tough. I couldn't believe it. She went through it like a pro. When she held Johnny in her arms, it became apparent that she was born to be a mother, and I could see how much she loved and cared for him right away. She patiently learned the ins and outs of being a mother, and gave of herself like I had never seen before.

In September of 2008, we welcomed Eliza into our family, and I saw that same toughness and love in Erica again. Her concern had been how Johnny would react to Eliza. I was not worried because he had learned nothing but love and caring from his mother. He loved Eliza from day one, just like he had learned from Erica.

Day in and day out I watch Erica with my kids. I watch the innovative ways that she finds to teach them new concepts and ideas. I watch how she patiently plays with them, colors with them, paints with them. I watch how she lovingly cares for each of them, and teaches them to care for each other. I know she feels frustrated sometimes because of the special circumstances we fins=d ourselves in. I watch her and I know that the Lord has blessed Johnny and Eliza with the perfect mom. I see this in the way that Johnny lovingly tries to teach Eliza the words he knows by pointing to pictures and objects and then signing them. I see it in the way the two of my children play together. I see it in the way that Johnny protects his little sister. I see it in the way Johnny reverently signs words like temple and Jesus and church. I see it in my kids' smiles and laughter. They are happy kids, because they have a superb mother.

In addition to a great mother, I could not have asked for a better wife. She has stood by me through ups and downs, through school and work. There have been times when I feel like giving up, but I know she still believes in me, and I find it in myself to believe in me. The Lord has blessed me with the perfect wife. I am everything I am today because of her, and her believing in me when nobody else did.

So, on this Mother's Day, I want to recognize my hero, my wife. She is awesome, and I am so blessed to have her in my life. I thank the Lord everyday for blessing me with the opportunity to spend this life and eternity with Erica.

Johnny Boy

2009-04-28T07:59:00.000-07:00

Johnny was born in January of 2007, and changed our lives for the better. A funny thing happens when you have a kid. Up to this point, as a married couple your life is all about two people, yourselves. Then you have a new baby, and life is about one person, the baby. Johnny was a runt from the beginning, weighing in at 6 lbs and 11 oz.

We loved watching Johnny grow and learn. One day he was a baby, then he was up and running around and climbing all over stuff, and he is a little boy, with his own personality. He was growing just like every other. He started to develop his own personality, and it was awesome.

As he grew, he didn't start talking. Our pediatrician wasn't concerned, because Erica was a late talker, so it could just run in the family. My mom started to be concerned about things like autism, because she reads too many articles about it. Our doctor assured us that Johnny had no symptoms of autism, he just didn't want to talk.

Then Eliza was born, and we found out about her hearing loss, and that it was genetic. The doctor said he was pretty sure that Johnny was fine, but that we should check just to make sure. He did a little screening thing in his office, and sure enough, it looked like there might be a problem.

Erica took Johnny to Primary Children's in Taylorsville, and they did some testing in the sound booth. The tests were inconclusive. They couldn't tell if he wasn't responding because he couldn't hear, or if he wasn't responding because he didn't get it. They wanted him to come back, but they also suggested that we set an appointment for a sedated ABR. When the kids get to be older, like Johnny, they have to have them sedated so they are not moving during the tests. This was in October. The test could not be scheduled until December 23. It was a little frustrating that we had to wait that long until we found out how bad Johnny's hearing loss might be.

I was convinced, again that nothing was wrong, that Johnny would be fine, and could hear fine. Erica knew better. She immediately started teaching Johnny sign language, and he began picking it up very quickly. It was like he had been wanting to communicate, but he did not know how. His whole world was opening up.

December came quicker than we thought, and soon it was the 23rd, and time to get him tested. We had to sleep deprive him, meaning we had to keep him up late and get him up early. We also weren't allowed to feed him anything, so he was in a great mood as we got to the hospital. He actually did really well. He was very curious about the hospital room and what was going on, particularly when they were hooking up all the sensors. He thought it was pretty cool. He just watched as the nurse got everything ready. Then they brought in the medicine to help him fall asleep. Soon he was out and they brought in the ABR machine and hooked it to the electrodes on his head, then they performed the test, and we waited, and waited. We figured something must be up when the audiologist had her supervisor come in for a second opinion. She tried to reassure us, but we knew better. At this point, this wasn't our first rodeo. But, we still didn't get any information, so we waited some more. Finally she was done, and let us know, Johnny was almost completely deaf. It was beyond the point that hearing aids would really work, and our option was a cochlear implant, after a six month trial with hearing aids. We had prepared ourselves for this outcome, but it didn't make it any easier. We tried to smile about it, but it was tough.

After he woke up, he was really out of it. He just kept falling asleep, and didn't want to do much all day. While we were still at the hospital, Johnny was waking up, and he wanted to play, but he was so tired, he had a hard time holding his head up. He would try to walk, but always ended up crawling, dragging his head on the floor. It was sad, but we couldn't help but laugh at him. It was pretty funny.

Since that time, Johnny has continued to grow and learn. He currently wears hearing aids, but they do almost nothing for him. We know that an implant will help him to hear, but we have to wait until our insurance to say we can have the implant done. The time is usually 6 months. We are pushing, and hoping that it will be lessened for Johnny. He already has to catch up two years, and the longer we wait, the longer he goes with auditory stimulus. The brain is an amazing thing, and he will be able to compensate down the road, but it is still frustrating.

He is also learning a ton of sign language, and it is fun to watch him learn and use it. The hard thing is that neither Erica nor I sign at all. Everything we know now, we learned from teaching Johnny, so we feel like we can't learn it fast enough to teach it to him. Erica is amazing, and does an incredible job teaching him all sorts of signs, but we were not prepared for this.

Johnny is a normal kid, though He loves Disney Cars, and Curious George, and Batman, and Mickey Mouse. He loves sports and playing outside. He loves his little sister, and is her little protector. It is fun to watch him take her along on his little journey through life. He is constantly showing her things, and trying to explain things to her. He is our little man, and I couldn't be prouder of him.

Eliza Ann

2009-04-27T07:48:00.000-07:00

Our oldest is Johnny, but our story begins with Eliza, or at least this part of our story does. Eliza was born in September of 2008. She was a beautiful, healthy little girl. We were so excited. I remember looking at her for the first time and just falling in love. She was my little girl from the very beginning.

The pregnancy had gone really well. There had been no complications whatsoever. It went better, in fact, than Johnny's did. The birth also went off without any problems. Like Johnny's it was quick once it started. Erica went into the hospital early in the morning, and by mid-morning we had Eliza.

Erica was tired, but relieved and happy. I love seeing her right after she has had a baby, she just glows.

While we were at the hospital, they kept coming in and checking on the baby and the mommy, as they always do. They would occasionally take Eliza for weighing and temperature and other various tests. One test that they do at every hospital is called an OAE. This is a hearing screening. They do it, probably without the parents even knowing. We didn't know that it was done with Johnny. We did know about it with Eliza, because she failed it.

I remember when the nurse came in and told us that Eliza had not passed the test. She assured us that this was fairly common. Sometimes fluid in the ear, or debris from the birthing process, can cause a baby to fail the test. This often clears up in a week or two, then many babies pass the test without any problems. She gave us some fliers on it, and encouraged us to set up an appointment to come back and have Eliza tested again.

I think it was at this point that Erica knew something was up, more serious than debris or fluid. A mother always seems to know these kinds of things. I was still just so happy from having a beautiful little girl, that I think I was convinced that we would get her tested and everything would be fine. My little girl was perfect.

A couple of weeks later, we found ourselves back in the hospital getting the OAE done again. My wife went in with Eliza, while I sat out with Johnny, and waited. And waited. I was sure that everything would be fine. I was positive that she would pass this time. Why would we have a child with hearing loss. Johnny could hear just fine, why would things be different with Eliza?

Erica came out with Eliza. She failed again. The audiologist gave us a referral for an ENT to get her ears checked out, to make sure there was no fluid in them or anything like that. We went, and there was no fluid there, everything was fine in that department. That meant it was time to go back to the hospital, for the OAE again. She failed. This time I was in the room. We left Johnny with one of our parents. After the OAE, the audiologist performed a test called an ABR, which was going to tell us how severe the hearing loss was. He performed the test, as best he could. The results were not as conclusive as he would like, since she woke up part way through, and we couldn't get accurate results. At this point, the audiologist thought that her hearing was not very bad, that she would be fine without hearing aids. He did want us to come back again, though, just to get better results.

We went back there again, and the machine wasn't working properly, and the results again were not very conclusive. It can be a frustrating thing, when as a parent, all you want is to find out what is going on with your child, and no one seems able to give you any answers.

We went then to an audiologist at Primary Children's out in Taylorsville. The machine worked fine, and we got results. The hearing loss was in the mild to moderate range. It was permanent. She would need hearing aids in order to develop speech. Erica and I had been preparing for this since the first tests, so I think we took it well. We were determined to do whatever it takes to help our little girl.

As a result of this, we met again with the ENT. He gave us an official diagnosis, and a prescription for hearing aids. He then sent us over to get a MRI to see the internal workings, to see what may be causing the hearing loss. We found out that she has an enlarged vestibular aqueduct. This meant that the hearing loss was not only permanent, but progressive. She would most likely lose all of her hearing. This was pretty devastating. At firs, we accepted the idea of hearing aids because it meant she would be able to hear. He hearing loss was only in the mild to moderate range, so it wasn't that bad. Then to find out she would end up being deaf, and there was nothing we could do to prevent it, that was hard.

As of right now, Eliza wears hearing aids. They seem to help a lot. She responds to sound really well with them in, like any other baby would, so we are thrilled. However, we know that down the road, that won't be the case. We have come to terms with that, and have accepted it. She may end up being deaf, but she is still our perfect little girl.

Who are Heroes?

2009-04-08T09:09:00.000-07:00

I've been thinking about this a lot lately. When I was growing up heroes seemed to be in rich supply. They seemed wholesome and good. The cartoons we watched had clear cut good guys and bad guys, and when we played, no one wanted to be the bad guys. Now things are getting more "real" and the lines between good and bad are getting faded and blurred. All to often the heroes we watch in movies or TV shows do things that just aren't right, that we would never want our kids to imitate. They are actually antiheroes, people who find themselves on the right side of the law, almost by mistake.

I want my kids to have real heroes, who choose to be on the right side of the law, who still see the difference between right and wrong, who stand for something. Heroes that work hard to persevere, even though everyone says they will feel. I want the to look up to people like that. More than that I want them to be people like that. I believe they are people like that. They have challenges, but they are persevering. We may have high aspirations for them, but we don't believe they have any limits. We don't see their hearing loss as a handicap, but as a way to grow and be better. That's what a hero does. They see opportunities when others see obstacles.

As I thought about what this blog would be, I thought I would write about men and women I knew or knew of that displayed heroic qualities for my kids to look up to. Then I realized a couple of things. Number one, I realized that my kids have heroes all around them in their families, and most importantly in their mom, who is the most amazing person in the world. They will no what a hero is because they will always have their mom to look up to. Number two, I realized that my kids are already heroes. I look up to them. Sometimes I feel bad for Johnny and all that he is missing, but then I see him smile, or I see him gently give Eliza a kiss or hug, or make her laugh. He is not missing anything important. I realized this blog would be about them and how they are growing from children to grown up heroes, and what we all can learn from them.