From AB's website (http://www.bionicear.com/products/auria_earhooks.asp):
"Auria® iConnectTM Adapter Your cable-free connector to miniaturized FM receivers. The iConnectTM Adapter provides cable-free access to the Phonak MicroLink MLxS, the most common advanced miniaturized FM receiver used in schools. With a separate power source, the device is designed to provide reliable FM reception without compromising regular power consumption.
*The Auria iConnect adapter is currently approved for US shipment only."
From my personal observations: YEAH! HOW COOL!
Okay, a little more personal, maybe. When I was at the workshop in NH (ref: two posts back), I was able to exhibit AB's new iConnect adapter for the Auria processor. My table was right next to the Phonak exhibit, so I was able to get some input from their rep, too. I will be the first to tell you that I think Matt is able to mainstream in school so easily because of his CI, but also in great part to his Phonak FM system. The FM has made life easier on the teachers, too. The teacher has to wear a transmitter, and Matt plugs his wireless, tiny receiver into his BWP. I can't imagine how much easier it would be if he could plug it, with no additional wires, into his BTE processor!
The iConnect is very new, and I don't think a version has been released for the CII BTE processor. I'll have to call and see if it will be, when, etc. BUT, Josh has an Auria, doesn't use it with his FM much right now. I'm wondering if I could havetheirr BTEs switched and reprogrammed? I don't know if it's possible, but if it is I'll go ahead and beg insurance to get it for him. Heck, I'd buy it out of pocket if I had to!
One feature I absolutely LOVE about the iConnect (other than it is wireless and oh so small), is that it uses its own battery power. I believe the battery has been tested to last 20-30 hours, but I'll have to check my paperwork on that. This means that it doesn't drain battery power and life from the BTE, a big plus. AB has really put a lot of work into their batteries, one of their strong selling points. They last a long time during the day, and are rechargeable and can last through years of recharging (our own experience). The new adapter uses disposablee batteries, but still lasts a long time per battery, not taking anything away from the BTE power. I'm not an engineer, but this is pretty good news to me.
I would like to get Matt a new processor all together, but am waiting for AB's 120 channel processor to be released. It's going to be a while before it comes out to the general public (testing, FDA approval, etc.), but I've spoken with an adult who is testing it (Aug. 28, 2005, post at: http://debrah.blog.com/) and she says it's so good that if insurance doesn't pay for it, I should just charge new ones on our credit cards, get them for the boys. If there's that much of a potential increase in hearing input for the boys, it is well worth the wait. And I don't think I'll have any problems justifying the upgrade to insurance, either. The boys are doing very well with the HiRes programming, but could do even better with the 120 channels. Yeah for progress and great technology!
Monday, October 31, 2005
Joshua's progress, CI kids with LDs
Hmmm... I seem to focus a lot on Josh. We've recently identified issues we need to work on with Matt's speech and comprehension, but I think that will be easy enough. But Joshua, Joshua, Joshua. What to do?
Can't tell you how thrilled I was to be at the workshop in NH last Friday (ref: last post). They hit the nail on the head: HI issues vs. LD issues. I think Josh's delays are due in great part to his deafness and inner ear malformations (esp. balance/vestibular problems), but even without that I think he'd be prone to motor processing delays and other problems. At the workshop I learned symptoms of delays due to Hearing Impairment, and those related to Learning Disabilities. Sometimes they're so similar that a teacher/evaluator not familiar with both can easily misidentify problems. That goes for well intentioned friends and family as well.
Josh had four therapists in WA, each coming at him from a different background and point of view, and I think each would give him a different "diagnosis". I trusted the input from two on his LD issues more than the others, mostly because I felt I could trust their experience more, hence their opinions. Very confusing for a mommy at times. And these therapists each only saw him for an hour a week! Even though Josh had his therapies over a good deal of time, I don't know if any of them quite got a good picture of his true weaknesses and abilities. Well, the two I trusted were much closer, anyway.
I'm happier and more comfortable now that his teachers see him two full days a week. With their experience I think we'll better be able to figure out where Josh's strengths and weaknesses lie, and how best to help him. I'm hoping he can stay in the program he's currently in, but am open to looking for options if he needs them. I was afraid that because he may have learning disabilities that he may not be appropriate for his current schooling. Then a teacher (not his) pointed out that many kids in the programs there have LDs separate of their HI, too. So far I'm very thankful that even though Josh may have some hurdles to overcome, he seems cognitively and socially able to handle his schooling.
Note about well meaning friends and family. I am much happier when they ask me about my boys, how they are doing, and truly listen. I've heard everything through the years, not much shocks me. But as well meaning as the friends and family may be, many times they are way off base with their observations and opinions. This weekend I was truly blessed to spend sometime with a sister-in-law who really talked with me about the boys. She is a very intelligent, caring lady, and it was a total joy to not just talk about all three of them, but to answer her questions, too. Many people are just afraid to talk/ask questions, form opinions on their own with very little real knowledge of the boys/issues. I don't know about all parents of disabled kiddos, but I'm one of the most open parents, and love opportunities to educate people about deaf/hoh/ld issues. I think the topic scares people sometimes, like they are afraid to ask thinking it may hurt me to answer. No, not really. Maybe in the beginning, but this has been my life for years, and now my passion to find ways to best help my boys. Sometimes a parent become their own children's specialist. I have a BS in Biology, but a self acquired Masters in CI Mommy Studies. :)
Can't tell you how thrilled I was to be at the workshop in NH last Friday (ref: last post). They hit the nail on the head: HI issues vs. LD issues. I think Josh's delays are due in great part to his deafness and inner ear malformations (esp. balance/vestibular problems), but even without that I think he'd be prone to motor processing delays and other problems. At the workshop I learned symptoms of delays due to Hearing Impairment, and those related to Learning Disabilities. Sometimes they're so similar that a teacher/evaluator not familiar with both can easily misidentify problems. That goes for well intentioned friends and family as well.
Josh had four therapists in WA, each coming at him from a different background and point of view, and I think each would give him a different "diagnosis". I trusted the input from two on his LD issues more than the others, mostly because I felt I could trust their experience more, hence their opinions. Very confusing for a mommy at times. And these therapists each only saw him for an hour a week! Even though Josh had his therapies over a good deal of time, I don't know if any of them quite got a good picture of his true weaknesses and abilities. Well, the two I trusted were much closer, anyway.
I'm happier and more comfortable now that his teachers see him two full days a week. With their experience I think we'll better be able to figure out where Josh's strengths and weaknesses lie, and how best to help him. I'm hoping he can stay in the program he's currently in, but am open to looking for options if he needs them. I was afraid that because he may have learning disabilities that he may not be appropriate for his current schooling. Then a teacher (not his) pointed out that many kids in the programs there have LDs separate of their HI, too. So far I'm very thankful that even though Josh may have some hurdles to overcome, he seems cognitively and socially able to handle his schooling.
Note about well meaning friends and family. I am much happier when they ask me about my boys, how they are doing, and truly listen. I've heard everything through the years, not much shocks me. But as well meaning as the friends and family may be, many times they are way off base with their observations and opinions. This weekend I was truly blessed to spend sometime with a sister-in-law who really talked with me about the boys. She is a very intelligent, caring lady, and it was a total joy to not just talk about all three of them, but to answer her questions, too. Many people are just afraid to talk/ask questions, form opinions on their own with very little real knowledge of the boys/issues. I don't know about all parents of disabled kiddos, but I'm one of the most open parents, and love opportunities to educate people about deaf/hoh/ld issues. I think the topic scares people sometimes, like they are afraid to ask thinking it may hurt me to answer. No, not really. Maybe in the beginning, but this has been my life for years, and now my passion to find ways to best help my boys. Sometimes a parent become their own children's specialist. I have a BS in Biology, but a self acquired Masters in CI Mommy Studies. :)
HEAR in New Hampshire Workshop, My Helper.
HEAR in New Hampshire (http://www.hearinnh.org/index.html) runs an auditory-oral program for children with a hearing loss. Last Friday I was fortunate enough to volunteer at the Advanced Bionics booth for HEAR's workshop, "Hearing Loss and Learning Disabilities". I LOVE going to events such as this one, not only to share info about AB's cochlear implant products, but also to learn from the events sponsors, attendees, and other exhibitors. It was a wonderful event!
I was there first and foremost to share information about Advanced Bionic's cochlear implant products. Of course, I was meeting the attendees, finding their specialty/need, and sharing a host of great material with them about cochlear implants. AB has great material for educators, very cute books for classrooms, and movies for children and adults. There was something at our exhibit for everyone: the audiologists, speech paths, special ed directors, teachers, and parents at the workshop.
The rep from the Clarke School for the Deaf was the same great lady I had met at the workshop in Rhode Island last month, too! I had to leave early before the raffle drawing, and she was going to mail me my winnings, if I won anything but the rocking horse. We just don't need a rocking horse in this house. :) Well, it was the grand prize, and I won it! She kept it and gave it to her granddaughter for her 2nd birthday the following week. How cool! Neat lady, and a good school, too (http://www.clarkeschool.org/). I'm going to visit the branch near our home sometime in the near future, too. Sounds like they have a wonderful program.
Well, the neatest part of volunteering at the workshop was having Matthew with me to "help" at the Advanced Bionics booth. Hubby showed up with all three boys just as the workshop had it's first break. It was not only wonderful having my family see me at the AB booth, but it was even more special for the attendees and other exhibitors to meet my family. Matt and Josh both had on Advanced Bionics shirts, and Matt immediately got behind the table to talk to folks. He was also a great helper when supplies were running low, replenishing from the stock I had under the table. I think just having him there brought some folks to our table to ask questions, and gave me a personal connection to them when I was sharing materials.
And did I ever share materials! Some of the other exhibitors were laughing at me handing out info, but it was my goal to find the need and fill it. Sometimes people would "feel bad" for taking a video or disc, but I had to explain that's why I had them there, to share. And that they could get even more books, videos, etc. for their school or center at the web addy on back of the material: www.bionicear.com (http://www.bionicear.com/webform.asp), or by calling Customer Service at: 1 800-678-2575 ext. 2101.
Now, it may sound hokey to you, I stand there and hand out material, but I find the whole experience fascinating. AB has great products and information to share, but it's also great to see how the education system is learning and evolving. CIs have been around for some time now, but are now seen in the school systems more than ever before. When Matt was implanted, only four years ago, I saw and heard that many school districts just didn't know what to do with implanted children. The kids were treated just as if they had hearing aids, when in reality they had "brand new ears". This weekend I was thrilled to meet educators who were familiar with the cochlear implant, and thirsty to learn more that could help them reach and teach the implanted child. I hope this is a trend for the better that continues.
On a smaller scale, the workshop was specifically addressing challenges that may face a Hearing Impaired child and impact their learning, and how to identify, differentiate and address HI issues vs. Learning Disability issues. They talked about how some children are not only HI but have additional LDs that may affect their access to education. I have seen this in my own family, with my own boys. Because Matt is deaf with a CI, he faces certain challenges but seems to overcome them easily. Not so with Josh. I think he has some learning disabilities that make it harder for him to use what he learns. Fortunately, the more I learn about him and the more people we work with, it seems like his is pretty okay cognitively, but will need some more work getting over hurdles now and in the future. It's hard for me to understand this sometimes, I can't imagine how educators do this in the classroom and speech rooms! The good ones earn my greatest respect. :)
Okay, I need to wake up a couple of kids, get ready for school. Happy Halloween! I hope to write more later about Josh's progress (getting some better oral motor movement!) and AB's new iConnect (http://www.bionicear.com/products/auria_earhooks.asp), WAY COOL stuff! I may see if Matt can use Josh's Auria and the iConnect for his FM use at school. I don't know if it can be reprogrammed that way, if they can essentially switch BTEs and reprogram them, but he would absolutely LOVE using it in school. More later...
I was there first and foremost to share information about Advanced Bionic's cochlear implant products. Of course, I was meeting the attendees, finding their specialty/need, and sharing a host of great material with them about cochlear implants. AB has great material for educators, very cute books for classrooms, and movies for children and adults. There was something at our exhibit for everyone: the audiologists, speech paths, special ed directors, teachers, and parents at the workshop.
The rep from the Clarke School for the Deaf was the same great lady I had met at the workshop in Rhode Island last month, too! I had to leave early before the raffle drawing, and she was going to mail me my winnings, if I won anything but the rocking horse. We just don't need a rocking horse in this house. :) Well, it was the grand prize, and I won it! She kept it and gave it to her granddaughter for her 2nd birthday the following week. How cool! Neat lady, and a good school, too (http://www.clarkeschool.org/). I'm going to visit the branch near our home sometime in the near future, too. Sounds like they have a wonderful program.
Well, the neatest part of volunteering at the workshop was having Matthew with me to "help" at the Advanced Bionics booth. Hubby showed up with all three boys just as the workshop had it's first break. It was not only wonderful having my family see me at the AB booth, but it was even more special for the attendees and other exhibitors to meet my family. Matt and Josh both had on Advanced Bionics shirts, and Matt immediately got behind the table to talk to folks. He was also a great helper when supplies were running low, replenishing from the stock I had under the table. I think just having him there brought some folks to our table to ask questions, and gave me a personal connection to them when I was sharing materials.
And did I ever share materials! Some of the other exhibitors were laughing at me handing out info, but it was my goal to find the need and fill it. Sometimes people would "feel bad" for taking a video or disc, but I had to explain that's why I had them there, to share. And that they could get even more books, videos, etc. for their school or center at the web addy on back of the material: www.bionicear.com (http://www.bionicear.com/webform.asp), or by calling Customer Service at: 1 800-678-2575 ext. 2101.
Now, it may sound hokey to you, I stand there and hand out material, but I find the whole experience fascinating. AB has great products and information to share, but it's also great to see how the education system is learning and evolving. CIs have been around for some time now, but are now seen in the school systems more than ever before. When Matt was implanted, only four years ago, I saw and heard that many school districts just didn't know what to do with implanted children. The kids were treated just as if they had hearing aids, when in reality they had "brand new ears". This weekend I was thrilled to meet educators who were familiar with the cochlear implant, and thirsty to learn more that could help them reach and teach the implanted child. I hope this is a trend for the better that continues.
On a smaller scale, the workshop was specifically addressing challenges that may face a Hearing Impaired child and impact their learning, and how to identify, differentiate and address HI issues vs. Learning Disability issues. They talked about how some children are not only HI but have additional LDs that may affect their access to education. I have seen this in my own family, with my own boys. Because Matt is deaf with a CI, he faces certain challenges but seems to overcome them easily. Not so with Josh. I think he has some learning disabilities that make it harder for him to use what he learns. Fortunately, the more I learn about him and the more people we work with, it seems like his is pretty okay cognitively, but will need some more work getting over hurdles now and in the future. It's hard for me to understand this sometimes, I can't imagine how educators do this in the classroom and speech rooms! The good ones earn my greatest respect. :)
Okay, I need to wake up a couple of kids, get ready for school. Happy Halloween! I hope to write more later about Josh's progress (getting some better oral motor movement!) and AB's new iConnect (http://www.bionicear.com/products/auria_earhooks.asp), WAY COOL stuff! I may see if Matt can use Josh's Auria and the iConnect for his FM use at school. I don't know if it can be reprogrammed that way, if they can essentially switch BTEs and reprogram them, but he would absolutely LOVE using it in school. More later...
Thursday, October 27, 2005
Ooh! Observations from visitors.
We had some out of town visitors last night, folks we met for the first time. Before I get too "down" on what I need to do to help Matt's speech more, I have to tell you about our guests' observations. They were amazed! Now, these folks aren't pros, but it was neat to hear them talk to Matt, and then about him afterwards. The were shocked to learn he had no hearing and minimal speech at 39 months when implanted, and that he spoke so well now. Granted, he was shy and didn't speak much, but it was cool to see how new folks responded to Matt. :)
Matthew's 4 Yr. Post Activation Checkup
Wow. He's doing pretty well, needed a little boost maybe in the low frequency range. We also noticed this with Josh, maybe because of the Mondini dysplasia?
The biggest eye opener came with his speech/auditory testing. I know Matt doesn't talk perfectly well. I think the tester said it was actually difficult to understand him when he speaks quickly, and that he may need work on his sylibants. She asked me what he does in speech and I answered, "I don't know." Then she told me how I could help with his sylibants, did I know what those were? "Nope." Boy, you'd think after four years with him I'd be doing better!
Funny, but he's been doing so well in our book that I have really been forgetting about working with his speech. For quite some time, now. This appointment was a good wake up call. I don't expect him to ever have "perfect" speech, but at least now I have a good gauge at where he's at, and where we need to keep moving with his progress. I was lucky to bump into his speech teacher today, and she and I had a good talk about this. She was wonderful at explaining exactly what they are doing in therapy, what the terms mean, and things I can do at home to help him. I've been so wrapped up in helping Josh, I just took Matt's speech for granted.
Well, I'm going to have him read to me nightly. The person we had an appointment with today recommended I highlight the sylibants in the books (we get them at thrift shops, cheap) to help Matt focus on them and improve his speech in that area. She said we naturally speak a little slower when reading aloud, that this can help him improve. Good idea! And she suggested I read to him, chapter book, no pics, and then ask him comprehension questions. No problem. I can do this with Chris there, too.
Wow, it's nice to finally settle in routines. The deployment and move took a lot out of us. I think we all suffered a little because of it. But I think we're also ready to dig in and work a little harder now. I don't even think I would have been capable to work more with Matt a year ago, glad I have the energy now. :) NEXT I have to teach Hubby what to do with Matt, too.
Ugh. Good eye opening experience. I love having three kids, but it is very difficult to give them each all of the energy and time I think they deserve. I have SO MUCH admiration for parents with more children. Some of my friends have said, "But you have the additional consideration of deaf/hoh issues." Well, kind of. I think every child, disabled or not, demands tons of energy and attention from parents. I am employed, I am my children's teacher. Wish I had a degree in parenting. I think those degrees take about 18+ years to earn? :)
OOH! OOH! Side note: When asking for directions to the parking garage, I bumped into Matt's CI surgeon! What a neat man, and how nice to see him again on Matt's four year CI activation anniversary. I'm glad we had the opportunity to see him, again! All of the folks at Matt's CI center are top notch. If we had to leave our old home, I'm glad we were able to come back here. :)
The biggest eye opener came with his speech/auditory testing. I know Matt doesn't talk perfectly well. I think the tester said it was actually difficult to understand him when he speaks quickly, and that he may need work on his sylibants. She asked me what he does in speech and I answered, "I don't know." Then she told me how I could help with his sylibants, did I know what those were? "Nope." Boy, you'd think after four years with him I'd be doing better!
Funny, but he's been doing so well in our book that I have really been forgetting about working with his speech. For quite some time, now. This appointment was a good wake up call. I don't expect him to ever have "perfect" speech, but at least now I have a good gauge at where he's at, and where we need to keep moving with his progress. I was lucky to bump into his speech teacher today, and she and I had a good talk about this. She was wonderful at explaining exactly what they are doing in therapy, what the terms mean, and things I can do at home to help him. I've been so wrapped up in helping Josh, I just took Matt's speech for granted.
Well, I'm going to have him read to me nightly. The person we had an appointment with today recommended I highlight the sylibants in the books (we get them at thrift shops, cheap) to help Matt focus on them and improve his speech in that area. She said we naturally speak a little slower when reading aloud, that this can help him improve. Good idea! And she suggested I read to him, chapter book, no pics, and then ask him comprehension questions. No problem. I can do this with Chris there, too.
Wow, it's nice to finally settle in routines. The deployment and move took a lot out of us. I think we all suffered a little because of it. But I think we're also ready to dig in and work a little harder now. I don't even think I would have been capable to work more with Matt a year ago, glad I have the energy now. :) NEXT I have to teach Hubby what to do with Matt, too.
Ugh. Good eye opening experience. I love having three kids, but it is very difficult to give them each all of the energy and time I think they deserve. I have SO MUCH admiration for parents with more children. Some of my friends have said, "But you have the additional consideration of deaf/hoh issues." Well, kind of. I think every child, disabled or not, demands tons of energy and attention from parents. I am employed, I am my children's teacher. Wish I had a degree in parenting. I think those degrees take about 18+ years to earn? :)
OOH! OOH! Side note: When asking for directions to the parking garage, I bumped into Matt's CI surgeon! What a neat man, and how nice to see him again on Matt's four year CI activation anniversary. I'm glad we had the opportunity to see him, again! All of the folks at Matt's CI center are top notch. If we had to leave our old home, I'm glad we were able to come back here. :)
Monday, October 24, 2005
Joshua is learning his letters, yeah!
I remember when Matt was finally diagnosed deaf, pre-CI, but not doing so well with his hearing aids, I wondered how in the heck I was going to teach him his ABC's. The only way I knew how was to sing the song. That doesn't help if you can't hear the song. When he was about 2.5 years old, I bought an ABC chart with signs as well as letters. He learned them ALL within a week! Not perfectly, but well on his way. He had the letter recognition and language skills built into him, and I believe this was a great strong point in his future education. He was not implanted until he was 39 months old, had very little usable hearing for a long time, but is doing VERY well right now in second grade, all oral education. It CAN be done.
Now enter Josh. He can hear, has a much more extensive hearing history than Matt did, but he's having a hard time actually speaking. I think that will come in his own time, with much good therapy. He can hear me sing the ABCs, recognizes the song a little, but can't sing back himself. I know, I know, I KNOW some folks would balk at the thought of teaching him the signs for the letters, but he's learning! Last Thursday I showed him the sign for C for his favorite book Corduroy, he also has the bear. On Friday he brought me the book and signed C, putting his C up to the same letter in the title! He recognized the letter! On Thursday his teacher introduced him to his written name and the letters, using sign. He is recognizing the J in his name, too! Not a pro yet, but it's a start.
Today I used a magnetic set of letters and a cookie sheet, and we went through the letters as he pulled them out. He VOCALIZED as best as he can as he signed them, too! He let me move his fingers to the right positions for the letters, and he let me help him a little with forming his mouth the right way for the letters. I'm very excited. He is NOT relying on the sign, but I think he is growing more comfortable with letters BECAUSE of the signs, and is also more comfortable using his speech, too. Way cool. And a week ago I didn't even think about teaching him the alphabet.
The alphabet sounds are what I used at home to put speech meaning to letters for Matt, too. We would go through the sign chart at least once at night, if not several times, vocalizing each letter as we signed it. It worked for Matt, I can only imagine it will help Josh, too. I've pulled out the alphabet charts I used with Matt, and taped them up in a couple places in the home.
I wish things would come easier for Josh sometimes. He is understanding more oral language every day. It would be so much nicer for him, though, if I could just wave a magic wand and he could talk perfectly. No such luck, but hard work ahead. But it really, REALLY helps to note the progress he makes, small steps as well as the big jumps. :)
Now enter Josh. He can hear, has a much more extensive hearing history than Matt did, but he's having a hard time actually speaking. I think that will come in his own time, with much good therapy. He can hear me sing the ABCs, recognizes the song a little, but can't sing back himself. I know, I know, I KNOW some folks would balk at the thought of teaching him the signs for the letters, but he's learning! Last Thursday I showed him the sign for C for his favorite book Corduroy, he also has the bear. On Friday he brought me the book and signed C, putting his C up to the same letter in the title! He recognized the letter! On Thursday his teacher introduced him to his written name and the letters, using sign. He is recognizing the J in his name, too! Not a pro yet, but it's a start.
Today I used a magnetic set of letters and a cookie sheet, and we went through the letters as he pulled them out. He VOCALIZED as best as he can as he signed them, too! He let me move his fingers to the right positions for the letters, and he let me help him a little with forming his mouth the right way for the letters. I'm very excited. He is NOT relying on the sign, but I think he is growing more comfortable with letters BECAUSE of the signs, and is also more comfortable using his speech, too. Way cool. And a week ago I didn't even think about teaching him the alphabet.
The alphabet sounds are what I used at home to put speech meaning to letters for Matt, too. We would go through the sign chart at least once at night, if not several times, vocalizing each letter as we signed it. It worked for Matt, I can only imagine it will help Josh, too. I've pulled out the alphabet charts I used with Matt, and taped them up in a couple places in the home.
I wish things would come easier for Josh sometimes. He is understanding more oral language every day. It would be so much nicer for him, though, if I could just wave a magic wand and he could talk perfectly. No such luck, but hard work ahead. But it really, REALLY helps to note the progress he makes, small steps as well as the big jumps. :)
Sunday, October 23, 2005
BEA Volunteering.
Whoo hoo! I don't only want to write about my cranky two year old CI kid, but am SO EXCITED that I will be going to an "event" at the end of the month as a Bionic Ear Association volunteer! This event is specifically geared toward teachers of the deaf, audiologists, special educators and parents from several states, about Hearing Loss and Learning Disabilities. I get to man the Advanced Bionics booth as an exhibitor, which sounds like work to some folks. But I am always excited to talk to people about the cochlear implant, how it can help children, and how educators can work with the implanted children. Advanced Bionics has a ton of material specifically geared toward educators and parents, and I absolutely LOVE sharing, too! Having two CI boys, one who's been in six different schools now (constantly moving army family), I know a little about the educational aspects of working with CI kiddos, too. Not as a subject matter expert like these folks, but as a mommy. :)
My oldest son, Matt, may be on hand with me at the booth, but that's not a given. We'll see how he's doing that day. First things first, focus on Advanced Bionics. Their material for educators is so great, introducing it to the audience is very easy. Matt has been with me to such a conference before. Most folks like seeing not only the implant in a display, but actually on a user, too. And I like spending the day with Matt doing stuff like this. He is a really cool kid!
The CI had been around for a while by the time Matt was implanted four years ago, but I think educators were just starting to see it more frequently in their classrooms. The school district we were in at that time just didn't seem to know what to do with implanted kids, how to reach them. Some didn't "get" the idea that these kids were hearing sound in a very different way for the first time in their lives. The educators I've met recently are much more open to the CI students, have seen the benefits good therapy can provide.
Matt is free to be in mainstream classes now, only using his FM for assistance. This is a small adjustment to the educator who wears the FM, but no other adjustments are needed. He doesn't need an interpreter, the teacher doesn't have to face him to make sure the sound gets to his CI, he doesn't have to sit in the front of the class. He DOES still go to speech therapy, though. I think more CI students like him in the system will help others see how a little work in the beginning (therapy, therapy, therapy, TC/oral/AVT/whatever) can really have great payoffs in the end. In the big picture, I think the work that goes into helping an implanted child can only alleviate stress on an overburdened educational system.
Well, those are my thoughts. I don't really get the chance at the conference to expound, that's not my job as a volunteer. But I'm excited that educators are exposed to CIs more now than ever before, and that AB has such good materials to assist them, too. Yeah! Sharing at functions like this really gets me excited. I've taught my boys that we aren't just telling people about their cochlear implants, we're "educating" them. Helping them understand and maybe change their perspective on the implant. Get them excited, too! :)
My oldest son, Matt, may be on hand with me at the booth, but that's not a given. We'll see how he's doing that day. First things first, focus on Advanced Bionics. Their material for educators is so great, introducing it to the audience is very easy. Matt has been with me to such a conference before. Most folks like seeing not only the implant in a display, but actually on a user, too. And I like spending the day with Matt doing stuff like this. He is a really cool kid!
The CI had been around for a while by the time Matt was implanted four years ago, but I think educators were just starting to see it more frequently in their classrooms. The school district we were in at that time just didn't seem to know what to do with implanted kids, how to reach them. Some didn't "get" the idea that these kids were hearing sound in a very different way for the first time in their lives. The educators I've met recently are much more open to the CI students, have seen the benefits good therapy can provide.
Matt is free to be in mainstream classes now, only using his FM for assistance. This is a small adjustment to the educator who wears the FM, but no other adjustments are needed. He doesn't need an interpreter, the teacher doesn't have to face him to make sure the sound gets to his CI, he doesn't have to sit in the front of the class. He DOES still go to speech therapy, though. I think more CI students like him in the system will help others see how a little work in the beginning (therapy, therapy, therapy, TC/oral/AVT/whatever) can really have great payoffs in the end. In the big picture, I think the work that goes into helping an implanted child can only alleviate stress on an overburdened educational system.
Well, those are my thoughts. I don't really get the chance at the conference to expound, that's not my job as a volunteer. But I'm excited that educators are exposed to CIs more now than ever before, and that AB has such good materials to assist them, too. Yeah! Sharing at functions like this really gets me excited. I've taught my boys that we aren't just telling people about their cochlear implants, we're "educating" them. Helping them understand and maybe change their perspective on the implant. Get them excited, too! :)
Rough night.
Josh had a rough night again last night. I'm really starting to believe that tinnitus is bothering him, as when I woke up and went to him, I had ringing in my ears, too. As well as a splitting headache, stuffed up sinuses. Sudafed and motrin helped me. I gave him a small dose of children's Benadryl to help him go back to sleep. It didn't help until I also put his CI back on to let him listen to music. That REALLY seemed to calm him. It so happens the heater is finally kicking in, and I'm wondering if the dust or other allergies are bugging both of us. I'll maybe give him a little Children's Motrin/Cold medicine when he wakes up, too. I don't like giving him meds like this, but it really bothers me to see him so upset and restless at night. Poor guy.
On a good note, he is trying to vocalize so much more now! We actually had "conversations" last night while he was so cranky. He is such a cool trooper! :)
On a good note, he is trying to vocalize so much more now! We actually had "conversations" last night while he was so cranky. He is such a cool trooper! :)
Saturday, October 22, 2005
Oral Motor Skills and Foster Care.
Seriously, Matt is four years post CI activation, and he's doing so well I don't even think about what he needs to do to improve. His speech is a bit off, like any normal Joe with a speech impediment. But we've been working on his "s" sounds, and he's doing much better. The more language he's exposed to, especially in his Spelling and Language Arts books, the more familiar he is with how words are actually spelled and spoken. I make him read aloud to me on a regular basis, and to his brothers at night. That helps a lot, too, keeps me clued in to where he may need help.
Then there's Josh. He's really vocalizing all the time now, so I find the need to focus on HOW he's vocalizing. Hubby says he doesn't care what it costs out of pocket, I need to look into PROMPT therapy for Josh. At least to get him evaluated, to see if it would help him. Josh's therapist at school is helping us with his oral motor skills, too. It's nice to have a good team, great support.
But I can't rely on how he does in school, I have to keep focused on helping him at home. Some days that's easier than others. Josh doesn't mind "working" on his speech when his other brothers do "therapy" with us, but he's getting a little more independent now, and stubborn. Most of the time he lets me touch his mouth area to get him to vocalize better, but not at all when he's tired. But as much as he gets frustrated, screeches and kicks at me at times, I'm stubborn, too, and hang in there with him. Maybe for him. I try to keep a balance, working with him toward progress, but not so much that he'll hate "therapy" and not let me near him. Some days I just want to bag everything and let him just skate with what skills he has. Not very nice of me, but that's how I feel at times. Very rarely, but like I said, some days are easier than others.
We've actually thought about putting our family in the ring to foster a deaf/hoh child in our area. We still need to make calls, inquire about the need around here. Well, I've already been told there's a need for such foster families. I don't think we're ready now to take in someone else, we still have to settle in our new home ourselves. I think if it weren't for our own sons' disabilities we'd have many more of our own children. That's not totally true, I really don't want to be pregnant again. I'm not shy about that, we've been through seven pregnancies with three boys full term. My body is just kaput with the thought of "trying again". And we were told we were infertile at one time! Ha!
But I like the idea of having another kid around, for the child's sake as well as for Josh's. I know we might have little say to pick and choose another child in the foster arena, but my ideal choice would be someone around Josh's age. Matt and Chris play so well together, I wish there were someone for Josh, too. He loves his gal friend at school, plays very well with her. It would be nice to have another little one here he could play with. We'll see... Right now we're just in the Considering Stage, inquiring about the details of foster care. It will be interesting to see how this pans out.
God knows (I mean that literally), we would be a good family for another deaf/hoh child. We've learned the ropes in our own lives, maybe we can share what we've learned with another boy or girl, too. :)
Then there's Josh. He's really vocalizing all the time now, so I find the need to focus on HOW he's vocalizing. Hubby says he doesn't care what it costs out of pocket, I need to look into PROMPT therapy for Josh. At least to get him evaluated, to see if it would help him. Josh's therapist at school is helping us with his oral motor skills, too. It's nice to have a good team, great support.
But I can't rely on how he does in school, I have to keep focused on helping him at home. Some days that's easier than others. Josh doesn't mind "working" on his speech when his other brothers do "therapy" with us, but he's getting a little more independent now, and stubborn. Most of the time he lets me touch his mouth area to get him to vocalize better, but not at all when he's tired. But as much as he gets frustrated, screeches and kicks at me at times, I'm stubborn, too, and hang in there with him. Maybe for him. I try to keep a balance, working with him toward progress, but not so much that he'll hate "therapy" and not let me near him. Some days I just want to bag everything and let him just skate with what skills he has. Not very nice of me, but that's how I feel at times. Very rarely, but like I said, some days are easier than others.
We've actually thought about putting our family in the ring to foster a deaf/hoh child in our area. We still need to make calls, inquire about the need around here. Well, I've already been told there's a need for such foster families. I don't think we're ready now to take in someone else, we still have to settle in our new home ourselves. I think if it weren't for our own sons' disabilities we'd have many more of our own children. That's not totally true, I really don't want to be pregnant again. I'm not shy about that, we've been through seven pregnancies with three boys full term. My body is just kaput with the thought of "trying again". And we were told we were infertile at one time! Ha!
But I like the idea of having another kid around, for the child's sake as well as for Josh's. I know we might have little say to pick and choose another child in the foster arena, but my ideal choice would be someone around Josh's age. Matt and Chris play so well together, I wish there were someone for Josh, too. He loves his gal friend at school, plays very well with her. It would be nice to have another little one here he could play with. We'll see... Right now we're just in the Considering Stage, inquiring about the details of foster care. It will be interesting to see how this pans out.
God knows (I mean that literally), we would be a good family for another deaf/hoh child. We've learned the ropes in our own lives, maybe we can share what we've learned with another boy or girl, too. :)
Wednesday, October 19, 2005
Rush Limbaugh.
To those who know me well, it is no secret that I'd like to meet Rush Limbaugh someday. And not because of his show or political beliefs, but because of his openness with his hearing loss and implantation. I'll never forget sitting in the car and hearing him announce he had a hearing loss and was going deaf. I believe that was October 8th, 2001, and Matt's surgery was the next day. If I remember correctly, Rush was implanted 19th, and then it was announced late the following January that he had received an Advanced Bionics implant. That made it personally special for us, as that meant he had the same implant that Matt had in his head. I'm guessing Rush had the CII, not the 90K implant put in, anyway, not sure.
Here are some internet readings I've gathered about Rush and his hearing loss/implantation:
Transcript from show when he announced he was going deaf:
http://www.audiologyonline.com/news/displaynews.asp?news_id=330
Excerpts from his show:
http://www.rushlimbaugh.com/home/folder/jan_21_rush_talking_about_his_hearing.guest.html
Story as followed by New York Post:
http://www.radiotalk.org/news/limbaughdeaf.html
Commentary:
http://www.jewishworldreview.com/cols/fund101101.asp
I really would like to meet Rush someday, shake his hand and thank him for continuing his work through his hearing loss and CI recovery. :)
Here are some internet readings I've gathered about Rush and his hearing loss/implantation:
Transcript from show when he announced he was going deaf:
http://www.audiologyonline.com/news/displaynews.asp?news_id=330
Excerpts from his show:
http://www.rushlimbaugh.com/home/folder/jan_21_rush_talking_about_his_hearing.guest.html
Story as followed by New York Post:
http://www.radiotalk.org/news/limbaughdeaf.html
Commentary:
http://www.jewishworldreview.com/cols/fund101101.asp
I really would like to meet Rush someday, shake his hand and thank him for continuing his work through his hearing loss and CI recovery. :)
Been pretty quiet here lately.
Well, boys are set in school, things have really calmed down.
Josh had his 18 month post CI checkup, he did fine with all frequencies except the low ones. We couldn't remap him yet because we didn't have his map from his old CI center yet. They had all the therapy notes, but not the map. They're not sure if they can boost the low frequency for him or not. He had full insertion of the electrode with his CI surgery, but because of the Mondini dysplasia he may not have great use in that specific range.
Receptively Josh's doing great, though. Well, for him. Better and better. And he's spontaneously signing and "saying" more every day. Yesterday at school his teacher said he spontaneously signed "today" for her when they were going over the calendar. That might not sound like much for some folks, but remember we're really trying to get him to use language on his own right now, and more than just labeling things. A big step for him. Today we were building Lincoln Log houses in the basement and he signed and vocalized "house" while we were doing it. Yes, this is labeling, too, but I was thrilled. House sounded more like "how", but it was great to hear, anyway. He is using sign and his voice throughout the day now. I should keep a journal of what he does in a day or two, and post it. I think I did that back at the old home, but that was more prompted language. I'd be interested to note what he's doing on his own now, too.
Matt is amazing. He's seven now, and becoming a bit pushy with friends. It's funny, they don't even look at him much like he's deaf, that's just a part of Matt. I find it very interesting, though, when I sit down and do his spelling homework with him. It gives me a very good insight into how he really hears and interprets words. He's in second grade, but doing third grade language arts/spelling work. It's a good fit. I'm thrilled to say he got 115% on his last spelling test, too! It may take him a little longer to learn the spelling sounds and rules, but he is doing great.
Sometimes it bothers me that Josh isn't progressing as quickly and easily as Matt has, but I think I'm finally accepting that it's okay. That acceptance takes a while, doesn't happen over night. It helps to see at least some forward progress for Josh. That keeps me motivated to help him more. But I'm also thrilled he's adjusted so well at his school. No problems with separation, he has an amazing teacher, and a little friend in his class, too. The allergy counts are down, and when he's not washed out tired (like last night), he's doing much better than during allergy season. I wish he could talk and tell me what's really going on with him sometimes, but I just work a little harder now at communicating with him on his level. Trying to "read" him better so I can help him, too.
Okay. Nothing major to report. I did find Matt's old communication book from school. It would be interesting to post some of those old notes. Pre and post CI. I would like to "interview" Matt again about his schooling now. That would be cool to put down, for his own reference later, too. I wanted to scan in photos of his "Scientist of the Week" presentation in his mainstream class, but I can find the scanner cord yet. Darn! More reason to finish unpacking the office. Well, more to come later!!! :)
Josh had his 18 month post CI checkup, he did fine with all frequencies except the low ones. We couldn't remap him yet because we didn't have his map from his old CI center yet. They had all the therapy notes, but not the map. They're not sure if they can boost the low frequency for him or not. He had full insertion of the electrode with his CI surgery, but because of the Mondini dysplasia he may not have great use in that specific range.
Receptively Josh's doing great, though. Well, for him. Better and better. And he's spontaneously signing and "saying" more every day. Yesterday at school his teacher said he spontaneously signed "today" for her when they were going over the calendar. That might not sound like much for some folks, but remember we're really trying to get him to use language on his own right now, and more than just labeling things. A big step for him. Today we were building Lincoln Log houses in the basement and he signed and vocalized "house" while we were doing it. Yes, this is labeling, too, but I was thrilled. House sounded more like "how", but it was great to hear, anyway. He is using sign and his voice throughout the day now. I should keep a journal of what he does in a day or two, and post it. I think I did that back at the old home, but that was more prompted language. I'd be interested to note what he's doing on his own now, too.
Matt is amazing. He's seven now, and becoming a bit pushy with friends. It's funny, they don't even look at him much like he's deaf, that's just a part of Matt. I find it very interesting, though, when I sit down and do his spelling homework with him. It gives me a very good insight into how he really hears and interprets words. He's in second grade, but doing third grade language arts/spelling work. It's a good fit. I'm thrilled to say he got 115% on his last spelling test, too! It may take him a little longer to learn the spelling sounds and rules, but he is doing great.
Sometimes it bothers me that Josh isn't progressing as quickly and easily as Matt has, but I think I'm finally accepting that it's okay. That acceptance takes a while, doesn't happen over night. It helps to see at least some forward progress for Josh. That keeps me motivated to help him more. But I'm also thrilled he's adjusted so well at his school. No problems with separation, he has an amazing teacher, and a little friend in his class, too. The allergy counts are down, and when he's not washed out tired (like last night), he's doing much better than during allergy season. I wish he could talk and tell me what's really going on with him sometimes, but I just work a little harder now at communicating with him on his level. Trying to "read" him better so I can help him, too.
Okay. Nothing major to report. I did find Matt's old communication book from school. It would be interesting to post some of those old notes. Pre and post CI. I would like to "interview" Matt again about his schooling now. That would be cool to put down, for his own reference later, too. I wanted to scan in photos of his "Scientist of the Week" presentation in his mainstream class, but I can find the scanner cord yet. Darn! More reason to finish unpacking the office. Well, more to come later!!! :)
Friday, October 14, 2005
Rebuilt Review.
I'm finding this book fascinating. I was hooked in the very beginning when Michael Chorost described the moments he realized he was loosing his hearing. But he is also deeply philosophical about the cyborg aspect of implantation. We have jokingly called Matt a "cyborg" in the past, little did we know how accurate we were!
I tend to skim through the deep discussions a little quickly, but am more touched by his personal feelings of hearing loss/deafness, educational past, CI experiences, and interactions with his parents. I think this book is a Must Read not only for deaf adults who may be CI candidates, but for CI parents as well. I haven't even read half of Rebuilt yet, but I already feel like I have a better understanding of what my sons might be going through. Everyone's story will be different, of course.
There is "techy talk" and very personal insights in this book. It can be purchased at www.amazon.com. 23 customer reviews on that site gave it a 5 out of 5 star rating, too. I will probably buy copies now to give away for Christmas. Thank you, Michael Chorost, for putting your story to words!
I tend to skim through the deep discussions a little quickly, but am more touched by his personal feelings of hearing loss/deafness, educational past, CI experiences, and interactions with his parents. I think this book is a Must Read not only for deaf adults who may be CI candidates, but for CI parents as well. I haven't even read half of Rebuilt yet, but I already feel like I have a better understanding of what my sons might be going through. Everyone's story will be different, of course.
There is "techy talk" and very personal insights in this book. It can be purchased at www.amazon.com. 23 customer reviews on that site gave it a 5 out of 5 star rating, too. I will probably buy copies now to give away for Christmas. Thank you, Michael Chorost, for putting your story to words!
To sign or not to sign?
I've been talking with a very neat lady about whether kids should use sign language after implantation. I don't think there's any one perfect answer to this subject. I think type of post CI therapy should dependson the abilities of the child, as well as family choices and what kind of resources are available for rehab. There is no one best way to rehab the kiddos.
Up front I'll tell you that I chose the CI for my son and committed to helping him learn how to cope in the hearing world. He signed early on, but I also pushed him toward better listening and speech skills. Matt has/had excellent therapists and is doing very well right now. Just because we used sign language does not mean we ever gave up with his listening and speaking skills. Matt progressed in these areas very well, and quickly. Some kids are able to do that.
Josh, on the other hand, is progressing slower. We use sign language with him much more, and he uses it back. Just getting him to use language is a primary goal right now. But while using sign, I also prompt him to use his voice. ALL THE TIME. It took a while for his brain to figure out what it was supposed to tell the mouth and voice box to do, but he's doing much better now. Hours and hours and hours of therapy, and I'm happy to see him progress, however slowly.
A parent needs to be observant, willing to figure out what the child's needs are, and try to meet them to the best of their ability and resources. A CI is not a magical cure, it is a tool, a device which can give some deaf folks access to sound.
That said, I think many children could benefit from auditory/verbal therapy. I'm not a pro with this therapy, but here are some good websites to find info for those who may be interested:
http://www.auditory-verbal.org/default.asp ,
http://www.learningtolisten.org/ ,
http://www.avli.org/ ,
http://www.listen-up.org/h_books/av.htm .
There is a good description on various therapies, including incorporating sign language, at: http://clerccenter2.gallaudet.edu/KidsWorldDeafNet/e-docs/CI/ModuleM.html (excellent links).
I do not think there is any one best way to work with a child, and unfortunately some parents don't have great choices, have to "make do" with what's available to them. Then they learn how to work with the early intervention and school systems, and this can be very frustrating at times, too.
Matt did use sign language, and I don't think it has slowed him down at all. And even with Josh's delays, he is already figuring out that speech isn't so difficult, is using it more and more on his own every day. Progress will take a bit longer fr Josh, but I do not in any way think his sign language use is preventing him from access to the oral world. If anything, it's been a wonderful bridge for him, helping pull him into more consistent vocalization. Thanks to good teamwork between his therapists and one determined Mommy. :)
Well, I did re-up the link to Jsoh's pic. If you're interested, clink the link on the page, it's back there. He is SUCH a cutie pie!
Up front I'll tell you that I chose the CI for my son and committed to helping him learn how to cope in the hearing world. He signed early on, but I also pushed him toward better listening and speech skills. Matt has/had excellent therapists and is doing very well right now. Just because we used sign language does not mean we ever gave up with his listening and speaking skills. Matt progressed in these areas very well, and quickly. Some kids are able to do that.
Josh, on the other hand, is progressing slower. We use sign language with him much more, and he uses it back. Just getting him to use language is a primary goal right now. But while using sign, I also prompt him to use his voice. ALL THE TIME. It took a while for his brain to figure out what it was supposed to tell the mouth and voice box to do, but he's doing much better now. Hours and hours and hours of therapy, and I'm happy to see him progress, however slowly.
A parent needs to be observant, willing to figure out what the child's needs are, and try to meet them to the best of their ability and resources. A CI is not a magical cure, it is a tool, a device which can give some deaf folks access to sound.
That said, I think many children could benefit from auditory/verbal therapy. I'm not a pro with this therapy, but here are some good websites to find info for those who may be interested:
http://www.auditory-verbal.org/default.asp ,
http://www.learningtolisten.org/ ,
http://www.avli.org/ ,
http://www.listen-up.org/h_books/av.htm .
There is a good description on various therapies, including incorporating sign language, at: http://clerccenter2.gallaudet.edu/KidsWorldDeafNet/e-docs/CI/ModuleM.html (excellent links).
I do not think there is any one best way to work with a child, and unfortunately some parents don't have great choices, have to "make do" with what's available to them. Then they learn how to work with the early intervention and school systems, and this can be very frustrating at times, too.
Matt did use sign language, and I don't think it has slowed him down at all. And even with Josh's delays, he is already figuring out that speech isn't so difficult, is using it more and more on his own every day. Progress will take a bit longer fr Josh, but I do not in any way think his sign language use is preventing him from access to the oral world. If anything, it's been a wonderful bridge for him, helping pull him into more consistent vocalization. Thanks to good teamwork between his therapists and one determined Mommy. :)
Well, I did re-up the link to Jsoh's pic. If you're interested, clink the link on the page, it's back there. He is SUCH a cutie pie!
Thursday, October 13, 2005
Peaceful sleep.
I'm not sure why Josh is now sleeping so well through the night. He was having a hard time before. Is it because the rain has washed away allergens outside? My hubby says people at work are having all sorts of problems with allergies--headaches, sinus problems, as well as ringing of the ears and balance issues. Imagine that for a little guy with malformed inner ears! Or maybe the very small amount of melatonin I give him at night is helping? My sleep cycles have been messed up as long as I can remember. Maybe it could help me, too.
But what I find most interesting is that Josh absolutely MUST listen to his music at night, while falling asleep. He was so cranky tired last night that it was difficult to get him in his PJs. When he saw his CI in my hand, he told me "No no no!", and covered his implant site with his hand. When I asked him if he wanted to listen to music, he jumped out of his bed, attempted to turn on the music himself, jumped back into bed and waited for me to hook him up! This used to work for Matt, too. Now all of my boys like to fall asleep listening to their music. Very precious.
In the beginning of this journey, when we first realized Matt was deaf, we wondered how many songs we had sung to him that he had NOT heard. How many times we had told him we loved him. Now I know he hears me. I'll tell Matt, "I love you." and he'll respond, "I love you too, mom." Something I think many other parents take for granted with their children. Josh tries to respond back, too. I think it will be a bit longer before I hear the actual words from him, "I love you, Mom," but he hears me now, and I find that amazing. A miracle. :)
But what I find most interesting is that Josh absolutely MUST listen to his music at night, while falling asleep. He was so cranky tired last night that it was difficult to get him in his PJs. When he saw his CI in my hand, he told me "No no no!", and covered his implant site with his hand. When I asked him if he wanted to listen to music, he jumped out of his bed, attempted to turn on the music himself, jumped back into bed and waited for me to hook him up! This used to work for Matt, too. Now all of my boys like to fall asleep listening to their music. Very precious.
In the beginning of this journey, when we first realized Matt was deaf, we wondered how many songs we had sung to him that he had NOT heard. How many times we had told him we loved him. Now I know he hears me. I'll tell Matt, "I love you." and he'll respond, "I love you too, mom." Something I think many other parents take for granted with their children. Josh tries to respond back, too. I think it will be a bit longer before I hear the actual words from him, "I love you, Mom," but he hears me now, and I find that amazing. A miracle. :)
Monday, October 10, 2005
I spent $60 for what?
Last week, whether it was allergies, illness, vestibular or tinnitus problems, Josh was not sleeping through the night and it was driving us bonkers. He's doing much better now, and so are all of us! :) He isn't taking Benadryl now, but I have him on a very small amount of melatonin each night. I don't know if that's been the answer, but he is sleeping very well now and waking up very chatty.
And along those lines, he's vocalizing all the time now. It almost reminds me of times right before Matt would make a great leap in progress, he would just stop everything for about a week. We were worried that he was regressing, then all of a sudden he'd be talking! Then in sentences! I was very worried about Jsoh last week, but now he's doing even better. Not a huge jump in progress, but just vocalizing all the time, and actually telling me what's on TV!
Okay, now here's the $60 part. Last week I bought a toy that has a camera and a microphone. I imagined using it to put the image of Josh and me on TV while we practiced vocalizing. I thought this would be great feedback for him, and he does actually like it. Yeah! But he's two, and that only lasts so long. As soon as he put the microphone down and we were finished with "therapy", the OTHER TWO BOYS were dancing in front of the TV. Shaking their backsides on the big screen. ARGH! So, my good intentions may be justified, but silly me never saw the other half of the "picture". :)
And along those lines, he's vocalizing all the time now. It almost reminds me of times right before Matt would make a great leap in progress, he would just stop everything for about a week. We were worried that he was regressing, then all of a sudden he'd be talking! Then in sentences! I was very worried about Jsoh last week, but now he's doing even better. Not a huge jump in progress, but just vocalizing all the time, and actually telling me what's on TV!
Okay, now here's the $60 part. Last week I bought a toy that has a camera and a microphone. I imagined using it to put the image of Josh and me on TV while we practiced vocalizing. I thought this would be great feedback for him, and he does actually like it. Yeah! But he's two, and that only lasts so long. As soon as he put the microphone down and we were finished with "therapy", the OTHER TWO BOYS were dancing in front of the TV. Shaking their backsides on the big screen. ARGH! So, my good intentions may be justified, but silly me never saw the other half of the "picture". :)
Saturday, October 08, 2005
Oops!
Yeah, we have a new hard drive! But, DARN, because of this I lost the link to the photo of Josh. I will try to update and add more recent info.
I think Josh's allergies have been causing problems with his balance lately. Three times now, I feel like he's "regressing", it rains and poof, he wakes up "chatty"! Matt went through something like this, too, at about the same age. It's been driving us nutso, but I'm glad to see Josh running around and communicating so well now.
I tried voicing these concerns when it happened with Matt, and the implant doc did tell me that there has been discussion about a minor malformation in Mondini patients that causes problems with balance. Well, if so, hand me the Benadryl! :)
I think Josh's allergies have been causing problems with his balance lately. Three times now, I feel like he's "regressing", it rains and poof, he wakes up "chatty"! Matt went through something like this, too, at about the same age. It's been driving us nutso, but I'm glad to see Josh running around and communicating so well now.
I tried voicing these concerns when it happened with Matt, and the implant doc did tell me that there has been discussion about a minor malformation in Mondini patients that causes problems with balance. Well, if so, hand me the Benadryl! :)
Monday, October 03, 2005
Pic of Joshua the Cutie Pie
Cool! Even with my slow hard drive, I was able to figure out how to add a photo. It won't be as good as the first, but I wanted to show you a pic of Joshua since I've been talking about him so much. This photo was taken in June at one of the places he got therapy. Josh used to love to play with the set up they had in the waiting room. He'd pull a lever and figure out which part of the display would light up. This was where he had physical therapy, and where I first realized how much the PT and CI rehab really worked together. When Josh felt more comfortable with his physical abilities, he was finally able to better focus on his communication skills.
I hope this picture posts well. I'm finally setting up my home office and hope to have more pics to post in the near future. :)
Rebuilt by Michael Chorost.
Okay, I have the book and I'm finally going to start reading it. I have two CI boys, but I can't tell you what it means to me to talk with and read about adult CI users' experiences. They can put their experiences into better words than my boys can. This helps me to more clearly understand what they may be going through, what they could be feeling through this whole CI process. I've heard very good things about the book, Rebuilt, can't wait to dig into it.
Here's the info from the inside cover flaps:
"Michael Chorost became a cyborg on October 1, 2001 (oh my gosh, the same nickname we had for Matt, implanted almost the same time, too!), the day his new ear was booted up. Born hard of hearing in 1964, he went completely deaf in his thirties. Rather than live in silence, he chose to have a computer surgically embedded in his skull to artificially restore his hearing.
This is the story of Chorost's journey--from deafness to hearing, from human to cyborg--and how it transformed him. The melding of silicon and flesh has long been the stuff of science fiction. But as Chorost reveals in this witty, poignant, and illuminating memoir, fantasy is now giving way to reality.
Chorost found his new body mystifyingly mechanical: kitchen magnets stuck to his head and he could plug himself directly into a CD player. His hearing was routinely upgraded with new software. All this forced him to confront complex questions about humans in the machine age: When the senses become programmable, can we trust what they tell us about the world? Will cochlear implants destroy the signing deaf community? And above all, are cyborgs still human?"
And then about Chorost:
"Michael Chorost has a B.A. from Brown University and a Ph.D. from the University of Texas at Austin. He lives in San Francisco, where he writes about science and consults on educational computing."
It also states that the jacket image is a CAT scan of the author's head, showing his implanted CI. Very, very interesting!!!!! I can't wait until my Matt is old enough to read the book for himself. Someday...
Here's the info from the inside cover flaps:
"Michael Chorost became a cyborg on October 1, 2001 (oh my gosh, the same nickname we had for Matt, implanted almost the same time, too!), the day his new ear was booted up. Born hard of hearing in 1964, he went completely deaf in his thirties. Rather than live in silence, he chose to have a computer surgically embedded in his skull to artificially restore his hearing.
This is the story of Chorost's journey--from deafness to hearing, from human to cyborg--and how it transformed him. The melding of silicon and flesh has long been the stuff of science fiction. But as Chorost reveals in this witty, poignant, and illuminating memoir, fantasy is now giving way to reality.
Chorost found his new body mystifyingly mechanical: kitchen magnets stuck to his head and he could plug himself directly into a CD player. His hearing was routinely upgraded with new software. All this forced him to confront complex questions about humans in the machine age: When the senses become programmable, can we trust what they tell us about the world? Will cochlear implants destroy the signing deaf community? And above all, are cyborgs still human?"
And then about Chorost:
"Michael Chorost has a B.A. from Brown University and a Ph.D. from the University of Texas at Austin. He lives in San Francisco, where he writes about science and consults on educational computing."
It also states that the jacket image is a CAT scan of the author's head, showing his implanted CI. Very, very interesting!!!!! I can't wait until my Matt is old enough to read the book for himself. Someday...
Signs of progress.
Okay, I've told some folks that it really helps to keep a journal, to see how far your kids have really come with therapy, communication, speech, etc.
Sometimes I get so frustrated with Josh's "slow progress", that I loose sight of how much he's really done in the last year. Josh's CI was activated 5/04. At that time his balance was improving, but his muscle tone was weak and his motor planning skills were still developing. He didn't finally start walking until late that October, before he turned two in early December. He didn't start "meaningful vocalization" until the following February, I think. I knew he was recognizing sounds and words, but it was hard to show others when he didn't have the right ways to express what he understood.
Now were starting October again, and Josh is not only walking, he's running, jumping a bit, climbing up and down stairs better (when he's not too tired), and has just recently discovered his urge to climb. And he can vocalize on his own, unprompted. Appropriately. Different vowels for a word (ah ee for Daddy, Uh-oh), some consonants, and responds much, much better to what he hears, too. So he's made great progress, and I have to remember that.
Pretty cool. I don't know where he'd be without his CI right now. Or where I'd be without good guidance from all of the professionals we've met over the years. Or w/o the great support from friends, internet forums, etc. I'm just finally learning to be happy just where I am, plugging along with my boys. :)
Sometimes I get so frustrated with Josh's "slow progress", that I loose sight of how much he's really done in the last year. Josh's CI was activated 5/04. At that time his balance was improving, but his muscle tone was weak and his motor planning skills were still developing. He didn't finally start walking until late that October, before he turned two in early December. He didn't start "meaningful vocalization" until the following February, I think. I knew he was recognizing sounds and words, but it was hard to show others when he didn't have the right ways to express what he understood.
Now were starting October again, and Josh is not only walking, he's running, jumping a bit, climbing up and down stairs better (when he's not too tired), and has just recently discovered his urge to climb. And he can vocalize on his own, unprompted. Appropriately. Different vowels for a word (ah ee for Daddy, Uh-oh), some consonants, and responds much, much better to what he hears, too. So he's made great progress, and I have to remember that.
Pretty cool. I don't know where he'd be without his CI right now. Or where I'd be without good guidance from all of the professionals we've met over the years. Or w/o the great support from friends, internet forums, etc. I'm just finally learning to be happy just where I am, plugging along with my boys. :)
Use what works.
When Josh gets bored, unfocused, he falls into his own little world. Especially when tired. That means it can take a lot of my attention at times to keep him motivated, learning. Some times I have to just step back and let him do "his thing". I try to keep him focused on playing with something, but sometimes I just need a break, too.
Some days Josh will follow me around the house and communicate GREAT! Other days, like today, all of us are tired and want to be left alone. But I'm still committed to doing some type of therapy with him. I have found that he absolutely LOVES the outdoors. Even on his worst days he'll communicate better, relax and use his voice if we're doing something outside. That might not be so practical in a school setting, but it works at home. And he seems to focus on certain things, like the moon, but he gets relaxed enough outside that I can acknowledge the moon and then get him talking about the trees. Really cool!
I don't know if you can tell, but today is one of those days I've had to step back from him a little, take a breather, then almost dig in the trenches with him again. He's not my only focus, I have two other little boys I put a great amount of effort into, and a husband who for some reason thinks I'm supposed to be cooking for him every night. I don't remember that in the wedding vows. Let's just say that lately I've been trying out a few pizzarias in our new town.
Okay, back to what works. Josh does best when well rested. Makes sense, right? Well, Matt does his best school work in the quiet of the end of the day. He's been doing "school books" since before he was three. I used to LOVE the products at: http://www.learningadventures.com/ . I've used them with both Matt and Chris, deaf and hearing alike. Very well put together material. To this day Matt loves doing his "school books". The school provides plenty of them now, ha ha! I haven't been at their web site for a while now, just saw they have packages for younger kids, may have to look into that for the boys again.
But I've had to learn to use what works with each of the boys. One likes books, the other will do better hands on, outside. Matt likes to read and work at the end of the day, I have to put time aside each morning to spend with Josh before he gets too tired. Matt is very oral, Josh seems to need more tactile/visual input right now. I can really push Matt, always could, I have to be a little more creative with Josh.
They pay me in hugs, double on the weekends, triple on holidays. :)
Some days Josh will follow me around the house and communicate GREAT! Other days, like today, all of us are tired and want to be left alone. But I'm still committed to doing some type of therapy with him. I have found that he absolutely LOVES the outdoors. Even on his worst days he'll communicate better, relax and use his voice if we're doing something outside. That might not be so practical in a school setting, but it works at home. And he seems to focus on certain things, like the moon, but he gets relaxed enough outside that I can acknowledge the moon and then get him talking about the trees. Really cool!
I don't know if you can tell, but today is one of those days I've had to step back from him a little, take a breather, then almost dig in the trenches with him again. He's not my only focus, I have two other little boys I put a great amount of effort into, and a husband who for some reason thinks I'm supposed to be cooking for him every night. I don't remember that in the wedding vows. Let's just say that lately I've been trying out a few pizzarias in our new town.
Okay, back to what works. Josh does best when well rested. Makes sense, right? Well, Matt does his best school work in the quiet of the end of the day. He's been doing "school books" since before he was three. I used to LOVE the products at: http://www.learningadventures.com/ . I've used them with both Matt and Chris, deaf and hearing alike. Very well put together material. To this day Matt loves doing his "school books". The school provides plenty of them now, ha ha! I haven't been at their web site for a while now, just saw they have packages for younger kids, may have to look into that for the boys again.
But I've had to learn to use what works with each of the boys. One likes books, the other will do better hands on, outside. Matt likes to read and work at the end of the day, I have to put time aside each morning to spend with Josh before he gets too tired. Matt is very oral, Josh seems to need more tactile/visual input right now. I can really push Matt, always could, I have to be a little more creative with Josh.
They pay me in hugs, double on the weekends, triple on holidays. :)
Sunday, October 02, 2005
Mommy Thoughts, and "I love you." :)
Okay, I LOVE my boys. I'm working hard to do what's best for them. But sometimes they do drive me bonkers. I've been blessed with excellent hearing, but can't turn my volume or sensitivity down when their little voices are grating on my last nerve. BUT, I CAN USE EARPLUGS! Seriously. I have a blood pressure cuff to monitor my blood pressure, and I have actually noticed that when they boys are bugging me and I use the earplugs, my pressure actually stays lower! I can still hear the boys when they need something, and I keep a close eye on them at all times, but their cute little voices don't bother me as much when they're muffled by the plugs. Go figure. :)
While Josh's progress may be slow, it is a bonus to see him still progressing forward in his language development. He doesn't wear his CI to bed (Matt does at times), so I sign more with him then. Last night I signed "I love you." and he held his hand up and vocalized "I uh oo" back to me. Yeah! He is trying to use his voice much more now, and that's encouraging. Once he's more comfortable and consistent, I'll start picking on the more fine details.
Oh! And last night he was having a rough time so we took a little walk outside. We've been working on using two words together at a time, instead of just labeling things. So we had to say, "Night night tree." and "Bye bye light." at least 50 times each. But he was so excited! He would "Walk walk walk", spot another three and point to it and start squealing! And he spotted airplanes passing overhead and would point and vocalize bye bye. Pretty cool.
His language is coming along better now. He's understanding and identifying colors, red is his favorite. He is using two words together now, like "cat food/eat". He understands more words receptively, sentences, but I'm talking about him expressively, too.
Ooops, gotta go. Will finish later.
While Josh's progress may be slow, it is a bonus to see him still progressing forward in his language development. He doesn't wear his CI to bed (Matt does at times), so I sign more with him then. Last night I signed "I love you." and he held his hand up and vocalized "I uh oo" back to me. Yeah! He is trying to use his voice much more now, and that's encouraging. Once he's more comfortable and consistent, I'll start picking on the more fine details.
Oh! And last night he was having a rough time so we took a little walk outside. We've been working on using two words together at a time, instead of just labeling things. So we had to say, "Night night tree." and "Bye bye light." at least 50 times each. But he was so excited! He would "Walk walk walk", spot another three and point to it and start squealing! And he spotted airplanes passing overhead and would point and vocalize bye bye. Pretty cool.
His language is coming along better now. He's understanding and identifying colors, red is his favorite. He is using two words together now, like "cat food/eat". He understands more words receptively, sentences, but I'm talking about him expressively, too.
Ooops, gotta go. Will finish later.
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About Me
- Chaotic Mom
- I am an Army spouse, mom of boys, volunteer and keeper of pets. Is there a balance in life? I sure hope so! ;)
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