Good-bye and welcome back

As some of you may have noticed, I made my blog private for a few days. I have always promised myself that no matter how negative the criticism got, I would leave my blog public, because I believe that it is a source of support for other parents and an opportunity to shed light on CIs, ASL, spoken language and Deaf education. Well, they managed to get me for a few days.

What happened? Well, I post on a certain deaf message board. There are many people there that do not like me, and do not like the choices we have made. They disparage me, my daughter and her progress. They have called me an audist more times than I can remember, and now they have begun to attack me personally, including making claims that I have severe mental health issues. It is disgusting. So, at one point they were attacking me, and trying to use the words from my blog as ammunition. So, I blocked it.

The whole situation makes me sad. These people are supposed to be my daughter's future and community. They are the ones that parents are supposed to turn to for support??? They attack every hearing parent who chooses a CI for their child, and most viciously, those who choose spoken language as well. It is despicable. Rather than encouraging ASL, they attack spoken language. There are individuals who claim that CIs don't work, others who say they "cringe" when they see children with CIs, and nearly all believe that it is appropriate to protest at a child's school......not ok.

All of this reminds me of how grateful I am for MY Deaf community. There are so many individuals who have made our journey amazing. They have been loving, supportive and welcoming. They were there when my daughter was diagnosed. They helped us see that she would be just fine, no matter what language she used. They helped us learn ASL, and gave us a way to communicate with Miss Kat. When we chose to give her a cochlear implant, they supported our choice. They told us that it was our decision, and they said that they knew we had deliberated and that we were making an informed, well thought out decision....and then it was not discussed again. When we decided to move Miss Kat to a spoken language program, they said that it was her decision, and that as long as we continued to give her language and expose her to the Deaf community, they were ok with that too.

I have always felt that the local Deaf community was a wonderful resource for us. They were kind and loving, open and welcoming. I will never be able to express how much they mean to us. I am also so thankful for Miss Kat's first school. Her bi-bi school taught her so much. They helped give her language, but also gave her a love for school and for learning. While eventually it was no longer an appropriate placement for her, that doesn't mean that it isn't great for other Deaf kids, or that the people who work there are not amazing, dedicated, wonderful people. While we may disagree on some things, I respect and love you all.

While we pack up a few last things, I would like to implore the online Deaf community (and those who choose to behave this way off-line as well) one last time. Please stop attacking. Parents aren't the enemy, even those who choose spoken language. Children with implants, even those who choose to listen and speak, and those who do NOT ever learn ASL, are still deaf. They are just deaf in another way. There are millions of Deaf and deaf people, and each and everyone is deaf in a different way.....and that is beautiful. There are successful ASL Deaf people, successful oral deaf people, successful Cuers and successful CI users.....and there are even successful people who do ALL of those things.

Don't tell parents that CIs don't work, that their child will never listen and speak, that isn't true, and they can see, everyday, in their own home, that it isn't. Instead of attacking spoken language, and telling them that their child will suffer and be damaged from CIs, tell them about what ASL can ADD to their lives. Talk about how wonderful, loving and inviting the Deaf community is, and how great it will be for their child to have EXTRA support, not that their child will grow up to hate them and reject them for choosing an implant.

I don't know, maybe I am a fool, but I want to build bridges. I want my child to listen and speak AND be Deaf. I don't want people to think that her CI is a failure because she chooses to sign. It just isn't true. But I also don't want people to think that just because she hears very well that she has become "hearing", she hasn't. She is Deaf, and always will be.

So, here we are. Perhaps I will be attacked again, for thinking that *I* (a hearing person) can give the Deaf community advice.....or maybe, somewhere, someone, will read my words, and take a tiny step towards the parents....volunteer to help out at a oral school, go to a meeting of a parents group, meet teenage oral/CI kids (and see how well they are doing), or that's too much, just be nice! Smile, nod and hug a parent or kid who needs your support!

Onward and eastward

This post has been a long time in planning, but I am finally prepared to announce our plan. As of December 29th, we will be moving. We are done dealing with Miss Kat's school, and their low expectations. There is a fight here that needs to happen, to change the education of deaf children in Utah, but Miss Kat's education can not come second. Perhaps, someday, when she is grown and fighting her own battles, I can return, and help change things for the next generation. But, right now, her needs must come first. We look forward to the opportunity to work with truly skilled and dedicated professionals in an environment that will allow Miss Kat to thrive.

As we are leaving, I would like to thank a few people who really have been amazing in our lives. These professionals have been amazing, and have been a great support to Miss Kat.

Miss Aimee- What can I possibly say about you? I believe you are the single best Teacher of the Deaf working today. You helped Miss Kat develop a love of learning that will take her far in life. You are amazing, and we are thankful for everything you have done for Miss Kat and all the Deaf children and their families you have worked with. Thank you again.

Cache- I could not respect you more. I believe you are a true professional with a real passion. I am so thankful that you went to the mat for us and helped Miss Kat get her implants. I know that without you, she would not be where she is today. Thank you for your dedication and skill. (We are terrified that we will never find someone who can match up to you!)

Susan- You have been with us, right from the start! You have helped us on every step of this journey. You supported us when we chose ASL and then when Miss Kat's spoken language exploded, you helped us encourage that as well. If we had more professionals like you....the world would be so different.

Thank you so much to these people, you have made a difference in my child's life, and the lives of so many other deaf children. I wish you nothing but the best for the future.

So, we packing, and getting ready. Miss Kat is excited, and we are prepared to start the next part of this journey.

"Why do you have that?"

Today at (Mc)"Donald's" we had a great experience. Miss Kat was playing and she would ask the other girls "Want to play with me?". It was adorable. (And they all did want to play with her, how could you not?). But, anyway, she had been playing with a little girl for about a half an hour when she ran over to me and said "She wants to know why I have this" and pointed to her implants. So, I asked her, "Why do you have implants? What do they do?" She responded "When it's off, I can't hear, but when it's on, I can hear you." So, I told her, "Go tell her that!", and she did! I saw the little girl's mom smile as Miss Kat clearly explained exactly what she was wondering too.

I was so proud to hear Miss Kat explain her implants and (a tiny bit) her deafness. She was proud and matter of fact, and everything I could have hoped for.

This reminded me of something I saw the other day at school when I was picking her up. She was in gym and it was noisy. They were playing basketball, but then the teacher wanted to switch games. She started giving new instructions and Miss Kat was on the other side of the gym. I watched as Miss Kat walked over to the teacher and naturally positioned herself so she could hear and understand! WOW! She knew what she needed and (without prompting, instruction or anything else) made sure her needs were met! Self advocacy all the way!

I have noticed that Miss Kat REFUSES to not understand. She is unwilling to miss out. If she doesn't hear you, she asks for a repeat. If she doesn't understand, she tells you. If she isn't following a story (usually a movie), she will ask for clarification. I couldn't be more pleased about it! I never want her to accept missing out. She deserves to understand, and she knows it!

2 years ago JTC asked me some questions...

And here is the end product!

It is so interesting to watch, now, after so much time. We were really, just right at the beginning of this section of our journey. I was terrified that we were making the wrong choice by emphasizing spoken language. We were so thrilled with her progress (which in retrospect was sooooo little!) but also so worried about the gap that she needs to close (ok, so that part hasn't gone away yet!)

So, anyway, thanks again JTC! You helped us so much, and we are proud to help you spread the word too!

Wrong again jerkoff

A received this comment today, and I would like to address it:

"So you're annoyed with the Deaf Community's warning you that Miss Kat's screaming and resistance to her newly turned-up Advanced Bionics failing-hot implant is a sign that you are forcing her to do things your way rather than doing what is genuinely in her best interest. That your dreams were guiding what should have been more rational decision making.
Now you find out that her implant really WAS causing her to scream because it had failed hot, and that Miss Kat was trying to tell you, but you wouldn't listen.
It's not too late to admit that you were wrong, and that Miss Kat was herself trying to tell you a Deaf Truth... That hearing people want hearing so badly that they will force deaf people to pretend that the interventions are "not that bad" when they ARE every bit that bad; that they are just endured out of love, and faith that a parent would not do something to hurt their child.
But these 2 posts seem to show you busily burning the bridges to the Deaf community over what turned out to be your own mistaken decision.
Or are you hoping just to quietly reimplant her before anybody notices that your decision to continue to force Miss Kat to endure the effects of a bad implant caused your daughter unnecessary pain and suffering to which YOU were far too long DEAF, because you chose to believe the medicos over your own daughter's cries for help.
Maybe time to LISTEN when Deaf people try to warn you? Even if they do not articulate their warning to your liking, perhaps TRY to understand that they are not only trying to HELP your daughter, but that they are too often RIGHT.
- AndyJ"


I'll be perfectly clear. My daughter's implant DID NOT FAIL. In fact, she just had her 3 month post MAP appointment on Monday and she is doing wonderfully. In fact, she had some speech discrimination testing done, with just her NEW CI and she scored:

WIPI- 21 of 25
MLNT- 54 of 59 phonemes and a word score of 11 of 12

Yeah, AB had a recall. That sucks. But my daughter is great than 90 days post and not affected. It is ridiculous for you to accuse me of hiding this. You are a straight up asshole. I'm not going to mince words. You actually believe you know better than I do. Well guess what, WRONG AGAIN. You sir, are the reason people make their blogs private. But, I won't. Up yours and the horse you rode in on.

Big changes under way

There are some very important decisions being made around here. Stay tuned (check back after Thanksgiving) and I will keep you updated!

Myths and Misunderstandings? (Part 2)

As I said in my previous post, as Miss Kat aged, we had some struggles. As I have talked about before, she eventually lost more hearing and we decided to look into a cochlear implant for her. As part of that process we were introduced to whole new groups of people.

When we first discovered Miss Kat's hearing loss, I read A LOT of books. I read several by Harlan Lane (including Mask of Benevolence in which he claims that no child has ever learned spoken language through cochlear implants ) and I read one called "Deaf Like Me". It was another story of how oralism fails so many children (I actually like the book, but it is very outdated) but the parents mention that they have a correspondence course for parents of deaf children, to help teach them spoken language. I figured it wouldn't hurt to look into the program....that was my first contact in the "oral world", the John Tracy Clinic.

After Miss Kat's first cochlear implant was activated we took the opportunity to go to California and participate in the John Tracy Clinic's 3 week summer session. The JTC summer session is unique because while they work with the children in the preschool classrooms, the parents also have classes. JTC believes that parents are the first and most important teachers of deaf children. They teach parents how to teach their children. In a few short weeks we learned about audiology, the acoustics of speech, language development, cognition, literacy and so much more. It was an amazing experience that I would encourage ANY parent of a deaf child to seek out (oh, and did I mention, it is free?!?)

So, while I was at JTC, I had my first interactions with real, live, oral parents and their children. They parents were amazing! They were active, involved, and extremely well informed. They weren't lazy or ignorant. They were seeking what they believed to be the best course of action for their child and that was spoken language. And you know what, it was working! Their children were thriving! These weren't kids with no language, they were laughing and telling stories and they could understand what their parents were saying. JTC also arranged panels for us. They had both a teen and adult panel. They had 15 or so former JTC students come and talk to us. It was very enlightening. These were oral deaf teens and adults. They were happy with oralism and the choices their parents had made for them. They were here, advocating for spoken language for a whole new generation of deaf kids......but I thought that didn't happen......

At JTC I even met a deaf teacher of the deaf. She was deaf and was raised orally, but as an adult learned ASL. She still advocates for listening and spoken language. She works everyday to help parents teach their children spoken language. Then I looked around even further. I started meeting Deaf parents who implanted their children and sent them to oral schools. My whole perspective started to change. These weren't lazy or evil people, they wanted the very best for deaf children. They want early, fluent language. They want the kids to excel and read well and achieve their dreams. They just happen to think that it is best accomplished a different way.

I forayed into an AG Bell conference locally. I was TERRIFIED to go. I thought that we would be looked down on for signing, or that people would judge us, think we were lazy (hmmm, isn't this all the things *I* was doing to the oral parents?) or whatever. So, I sat down and learned....I learned a lot! The first thing I noticed was that NO ONE was advocating against ASL. They didn't say or even imply that ASL was a bad choice, that just isn't where their expertise lies. They were simply advocating and teaching about one area, spoken language.

So now I was very confused. I was seeing what I had once considered impossible. I was seeing happy, healthy, thriving deaf children and adults who choose to be oral. They have great language, they read well, the go to college, and then, as adults, they advocate FOR oralism....

Over the next year, Miss Kat's spoken language blossomed. Her spoken language soon outstripped her signing. She began to drop signing, even though we continued to sign with her and expose her to the Deaf community through events, her friends, and our weekly church services. There are definitely times where she struggles and needs clarification through ASL, but there are other times when she glares at us when we sign and says "I know, I heard you!". I would say that ASL is no longer her primary language. She actually prefers to speak, and we were told this was impossible. (And there will still be people who comment on this blog saying that it is because we put too much emphasis on spoken language and she is just trying to please us, but we, and anyone who meets her, knows better).

So, where does that leave us?