I left this as a comment on someone else's blog, but I felt like I should also share this story here.
I asked Miss Kat a few days ago (please picture with appropriate signs!), "When you grow up big like Mommy and Daddy, and you grow a baby in your tummy" (her eyes grow very wide with wonder at her being big with a baby in her tummy) "and that baby is born, do you want your baby to be Deaf like you, or hearing like Mommy and Daddy?" She answered "Deaf".
I was so happy, my eyes teared up a little! Nothing on earth would make me happier than her to marry a great Deaf man from a Deaf family and for her to have tons of Deaf babies. I don't know if that will happen because Miss Kat's deafness is caused by medication and is in no way genetic....but we can all hope right?!
Kat Reading
Saturday, February 21, 2009
3 month post-CI testing
Yesterday at speech, Miss Kat had her 3 month post activation "testing". She did very well.
Now, as a rule, they say up to the first year, we should be focusing on just listening. Hearing babies spend the whole first year of their lives listening before they ever produce a word. Miss Kat is different, first because she is so much older. She is labeled a "late implanted" child....very late in fact, because I think that they start saying "late implanted" at about age 3! But in her favor is the fact that she heard normally for the first year of her life, and then had good amplification with her hearing aids for at least 3 more years after that. Her ears (and therefore brain) have never been without sound. She has never been profoundly deaf either. Even when we implanted her she was hearing into the speech range, at least the lowest frequencies. Overall, I think her last audiogram had her at about 40-45 db across the "speech banana". Which, actually, isn't terrible. It just wasn't working for her. It wasn't enough for her to be able to learn spoken language. Another child could function with Miss Kat's hearing loss, and learn spoken language very easily, but something in her ears was different. She couldn't do it. Also, in Miss Kat's favor is that she already has language. She isn't living without the ability to communicate. Her brain is right where it needs to be, just her ears and mouth are behind!
Ok, so back to the testing. First they did the ESP (Early Speech Perception) test. This test uses very different sounding two syllable words to choose from. The words were "toothbrush", "airplane", "hot dog" and "french fries". When we first started this journey Miss Kat was given this test and she scored 4 out of 24, and those were lucky guesses. Today she got 100% correct.
We moved up to the next test. This test was called the Spondee test. It uses 4 words that begin with the same sound, and have only one syllable. This test is so much more difficult that Miss Kat was never able to even complete the test with anything other than random guesses before her CI. Yesterday they used the words, "book", "ball", "bed" and "bird". Miss Kat missed one because she wasn't paying attention but then corrected it! She had no trouble with this test at all.
The third and final listening test that she had our therapist called the "Mr. Potato Head Challenge". This is a modified open set test that uses sentences. It tests not for discrimination, but for actual comprehension. She had never been close to this level of functioning pre-CI. The therapist would say things like "Hand me Mr. Potato Head's yellow hat" or "Make Mr. Potato Head wave good-bye" and Miss Kat would need to do those things. She did very well. She got 8 out 15 responses. I am amazed at her progress. It has only been 3 months and she is already this far. Miss Kat's therapist said that it can take years for some kids to get to comprehension levels!
They also did a little speech test for Miss Kat too. They flipped over a card and Miss Kat would just say the spoken word for the picture on the card. She had a word approximation for all 20 of the cards. (So there school SLP! You thought a goal of 25 word approximations was appropriate for one year from now? HA!) It was another easy test for her!
Miss Kat is doing so well. I'm so proud of her. I had no idea she would ever be able to do the things she is already doing. She is an amazing girl.
Now, as a rule, they say up to the first year, we should be focusing on just listening. Hearing babies spend the whole first year of their lives listening before they ever produce a word. Miss Kat is different, first because she is so much older. She is labeled a "late implanted" child....very late in fact, because I think that they start saying "late implanted" at about age 3! But in her favor is the fact that she heard normally for the first year of her life, and then had good amplification with her hearing aids for at least 3 more years after that. Her ears (and therefore brain) have never been without sound. She has never been profoundly deaf either. Even when we implanted her she was hearing into the speech range, at least the lowest frequencies. Overall, I think her last audiogram had her at about 40-45 db across the "speech banana". Which, actually, isn't terrible. It just wasn't working for her. It wasn't enough for her to be able to learn spoken language. Another child could function with Miss Kat's hearing loss, and learn spoken language very easily, but something in her ears was different. She couldn't do it. Also, in Miss Kat's favor is that she already has language. She isn't living without the ability to communicate. Her brain is right where it needs to be, just her ears and mouth are behind!
Ok, so back to the testing. First they did the ESP (Early Speech Perception) test. This test uses very different sounding two syllable words to choose from. The words were "toothbrush", "airplane", "hot dog" and "french fries". When we first started this journey Miss Kat was given this test and she scored 4 out of 24, and those were lucky guesses. Today she got 100% correct.
We moved up to the next test. This test was called the Spondee test. It uses 4 words that begin with the same sound, and have only one syllable. This test is so much more difficult that Miss Kat was never able to even complete the test with anything other than random guesses before her CI. Yesterday they used the words, "book", "ball", "bed" and "bird". Miss Kat missed one because she wasn't paying attention but then corrected it! She had no trouble with this test at all.
The third and final listening test that she had our therapist called the "Mr. Potato Head Challenge". This is a modified open set test that uses sentences. It tests not for discrimination, but for actual comprehension. She had never been close to this level of functioning pre-CI. The therapist would say things like "Hand me Mr. Potato Head's yellow hat" or "Make Mr. Potato Head wave good-bye" and Miss Kat would need to do those things. She did very well. She got 8 out 15 responses. I am amazed at her progress. It has only been 3 months and she is already this far. Miss Kat's therapist said that it can take years for some kids to get to comprehension levels!
They also did a little speech test for Miss Kat too. They flipped over a card and Miss Kat would just say the spoken word for the picture on the card. She had a word approximation for all 20 of the cards. (So there school SLP! You thought a goal of 25 word approximations was appropriate for one year from now? HA!) It was another easy test for her!
Miss Kat is doing so well. I'm so proud of her. I had no idea she would ever be able to do the things she is already doing. She is an amazing girl.
Saturday, February 14, 2009
Another IEP meeting, and a change
We had Miss Kat's second IEP meeting in two weeks. The school would not budge. We can either take what we have right now (Oracy, every morning for 15 minutes working on phonics, by a hard of hearing woman trained in bilingual education, not oral, speech once a week by an SLP who has never worked with a successful CI user, and NO listening or spoken language time...not to mention terrible speech goals) or we can move to an oral program with sign support.
She will be moving. Not because we want her to stop signing, or because we value spoken language over ASL, but because it is what is right for her. We have a very short window of opportunity for success with the implant. Most of the progress she will make will be in the next 3 years. We want her to have the most opportunities, and before the CI that meant ASL and bilingual education. Post-CI it means an oral program. It is not because we now value speech above language or education, but because the silence of bi-bi WILL hold her back. She needs to immersed in sound and spoken language and they just can't (or won't) do that.
This is a terribly bittersweet moment for us. We have always hoped that our child would be able to succeed with spoken language, but now that she has, we are sad for the things she will be forced to leave behind. She has a wonderful school with kind, loving, sweet friends. I had so hoped to see her grow up with them. I love her facial expression, and the way her body looks when she signs. She is so beautiful.
I hope that we will be able to continue her growth in ASL and in spoken language, but I fear the worst. When you have two communities that fight and loath each other the way that the Deaf and AVT do, it is difficult. I hope the local Deaf community will continue to see my daughter as their own, the way they have for so long. I hope that she will still be welcomed in the homes of these friends. I hope that they will still love her and share their lives with her.
I am so afraid. I cry and cry over this decision. I do not want to be the "oral mom". I do NOT want to sacrifice Miss Kat's happiness for speech. I just want to give her every opportunity and to follow her lead, and now, I fear her path has taken us to oral school. Ugh, things were so easy when she only wanted ASL.
I know that she will forever need ASL. She will need to use interpreters, probably in school and in "real life". In fact, some day she may go back to using ASL only, and perhaps take off her CI. And for this reason, we will continue to use ASL in our home, community and church. She needs to continue to gain fluency in ASL, it is her first language and it will be part of her forever. I hope that the Deaf community will continue to help our family raise a bilingual child.
All I want is that when she comes to me as an adult, I can look her in the eyes and tell her that I gave her everything. I gave her the chance to be successful. I gave her every opportunity and tool I could, and that I followed her lead.
She will be moving. Not because we want her to stop signing, or because we value spoken language over ASL, but because it is what is right for her. We have a very short window of opportunity for success with the implant. Most of the progress she will make will be in the next 3 years. We want her to have the most opportunities, and before the CI that meant ASL and bilingual education. Post-CI it means an oral program. It is not because we now value speech above language or education, but because the silence of bi-bi WILL hold her back. She needs to immersed in sound and spoken language and they just can't (or won't) do that.
This is a terribly bittersweet moment for us. We have always hoped that our child would be able to succeed with spoken language, but now that she has, we are sad for the things she will be forced to leave behind. She has a wonderful school with kind, loving, sweet friends. I had so hoped to see her grow up with them. I love her facial expression, and the way her body looks when she signs. She is so beautiful.
I hope that we will be able to continue her growth in ASL and in spoken language, but I fear the worst. When you have two communities that fight and loath each other the way that the Deaf and AVT do, it is difficult. I hope the local Deaf community will continue to see my daughter as their own, the way they have for so long. I hope that she will still be welcomed in the homes of these friends. I hope that they will still love her and share their lives with her.
I am so afraid. I cry and cry over this decision. I do not want to be the "oral mom". I do NOT want to sacrifice Miss Kat's happiness for speech. I just want to give her every opportunity and to follow her lead, and now, I fear her path has taken us to oral school. Ugh, things were so easy when she only wanted ASL.
I know that she will forever need ASL. She will need to use interpreters, probably in school and in "real life". In fact, some day she may go back to using ASL only, and perhaps take off her CI. And for this reason, we will continue to use ASL in our home, community and church. She needs to continue to gain fluency in ASL, it is her first language and it will be part of her forever. I hope that the Deaf community will continue to help our family raise a bilingual child.
All I want is that when she comes to me as an adult, I can look her in the eyes and tell her that I gave her everything. I gave her the chance to be successful. I gave her every opportunity and tool I could, and that I followed her lead.
Monday, February 9, 2009
New Language
I just wrote up a little list of Miss Kat's receptive words for her IEP. She now has 86 confirmed, receptive words. When I write down words, I am very cautious. I only count words that I have seen her understand in casual language (open set) and multiple time. I don't count guessing, or words that she gets only sometimes, or the ones we use in her closed set therapy sessions.
So, pre-implant she had 38. (See http://misskatsmom.blogspot.com/2008/10/miss-kats-spoken-language.html) Today her total is 88!!!! That is almost 50 words in two months!!!!!
Unbelievable!
So, pre-implant she had 38. (See http://misskatsmom.blogspot.com/2008/10/miss-kats-spoken-language.html) Today her total is 88!!!! That is almost 50 words in two months!!!!!
Unbelievable!
Friday, February 6, 2009
Headphones
I have a few different things to share about the last few days and Miss Kat's life and progress.
1. I think Miss Kat needs a new MAP. Today at speech she seemed to not be hearing as well as she has been. She mixed up her "ooo" and "mmmm" sounds. Plus, she was sure that "boot" and "boat" were the same. No matter how many times we showed and repeated she had trouble and at one point she even told said "They are the same". I don't know how to know if this is a listening issue or a MAP issue.
2. We are having another IEP meeting for Miss Kat, this Tuesday. I doubt anything will change, but I am going to get the reasons for her denial of services, in writing, so I can start "due process".
3. Today, Miss Kat was watching a little movie on Daddy's iPod. (Ducktales, I believe) In the past she has watched shows that are practically silent, such as old Chip and Dales or Tom and Jerry. But today the movie was quite "talky" and I got upset that she was watching it silently. I asked Daddy what the point of giving her movies that talk if she won't be able to listen to them. So he suggested we go and get her some headphones! We placed them over her head and she loved them! I love seeing her little light flash as she watches the movie. I don't think she will be letting us have silence anymore!
1. I think Miss Kat needs a new MAP. Today at speech she seemed to not be hearing as well as she has been. She mixed up her "ooo" and "mmmm" sounds. Plus, she was sure that "boot" and "boat" were the same. No matter how many times we showed and repeated she had trouble and at one point she even told said "They are the same". I don't know how to know if this is a listening issue or a MAP issue.
2. We are having another IEP meeting for Miss Kat, this Tuesday. I doubt anything will change, but I am going to get the reasons for her denial of services, in writing, so I can start "due process".
3. Today, Miss Kat was watching a little movie on Daddy's iPod. (Ducktales, I believe) In the past she has watched shows that are practically silent, such as old Chip and Dales or Tom and Jerry. But today the movie was quite "talky" and I got upset that she was watching it silently. I asked Daddy what the point of giving her movies that talk if she won't be able to listen to them. So he suggested we go and get her some headphones! We placed them over her head and she loved them! I love seeing her little light flash as she watches the movie. I don't think she will be letting us have silence anymore!
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