Friday, July 30, 2010
bidding farewell on day 15
I think today at the John Tracy Clinic was the shortest Friday of all, because it just flew by. It was wise for me not to wear any makeup, because the tears flowed freely. We enjoyed our last circle time with our kids, had a few closing remarks from the wonderful people who organized our adventure, then had a support group meeting with the entire group, where we were given the opportunity to say our closing remarks. We then went to a lovely closing ceremony where we all got certificates and some closing remarks. We picked up our kids, headed to the big tree, and had one last photo taken. Then we said our farewells.
We all expressed open door policies to everyone in the group, so there might be some future reunions in various parts of the world. But if not, we will all stay in touch through facebook or e-mail or some other media. One thing's for sure though, we will never forget the friendships we've forged over the last 3 weeks. Living together in the same apartment building and spending valuable time on the lawn in the evenings brought our lives together for these 3 weeks with one common theme - to help our d/hh kiddos reach their fullest potential, and make sure that we are the most informed part of that equation. We especially cherished those evenings on the lawn when our kids could just be kids without any explanations or funny looks and we could talk about anything we wanted, including hearing loss.
We've said our goodbyes, expressed our immense gratitude and now we are packing and cleaning up while Lucas takes a nap. We are off to a hotel for the weekend, and we fly back on Sunday. It feels strange to leave our home-away-from-home and go to a hotel. We feel happy and empowered to take on the world and spread what we've learned. As the tip of the day said today:
day 14, our last full day
I can't believe we're here already - the last full day. We've been kind of trying to prepare Lucas for going home, but it's been pretty tough on me. At school today, I saw that they made a poster with a car and an airplane going towards a house, then each of the kids put their picture next to which way they're getting home. Lucas talked about going on a plane when I picked him up, so he at least knows something is up.
This morning we had a session on phonological speech levels and how to give optimal conditions for carryover of speech skills. We were encouraged to stay positive (not: no, you're saying that wrong, but rather: listen, mine's different) when correcting words. Also a great way to correct words and put them back into the auditory loop is just by repeating them correctly in a meaningful context.
We had our last small group support group meeting.
We ate lunch for the last time in the sunrise courtyard with our blogging buddies. Then we met with Lucas's SLT to review his testing results and get a copy of a draft report. The report looks amazing, and is very detailed. I can't wait to get the final copy in a few weeks!
This afternoon's session was on supporting siblings & family relationships. Although we don't have a sibling for Lucas (yet), it was interesting to learn about some of the difficulties that typically developing kids have when they are the sibling to a special needs brother or sister. I will keep my notes handy for the future. We also got some suggestions on children's books about kids with CIs and hearing loss.
Our last session (ever... sigh) was on cognition. The classroom teacher who presented it did a really great job of giving concrete examples and showing a video of her class to illustrate her points. She mentioned the scary statistic that if children don't develop a language system (oral or sign) by age 5, they will likely have cognitive impairments.
We ran some errands after school, and then spend the rest of the evening on the lawn with the families. Everyone stayed out later than usual, soaking in our last evening together. I won't be wearing any makeup tomorrow, because I'm anticipating a lot of tears.
Thursday, July 29, 2010
an academic day 13
We started our day off with an appointment with audiology. We got some great results last time, and this time, she wanted to test Lucas's left ear with the hearing aid. Much to our surprise (and delight), Lucas got some measurable results while aided. He still doesn't hit the speech banana, which means that he can't hear any speech at all, but he's definitely getting some environmental sounds with it. He's still an excellent candidate for a 2nd cochlear implant, but it's very exciting to us that his hearing aid may be able to help a bit! When we get home, I'm going to make an appointment with our local audiologist to have a new earmold made. He's also been tolerating the aid pretty well. We will continue to encourage him to wear it at home.
We had a very academic schedule today, with four lectures. The first was about social interactions and the child with hearing loss, then phonetic speech level, then advanced auditory skills and then mainstream & inclusion.
Social interactions and the deaf child was interesting. Many of the social skills that hearing peers develop are not as natural for hearing impaired kiddos. We were given a checklist to reference and use to see how our children are doing socially. At this time, we feel Lucas has some pretty great social skills, but we have some things to work towards as he gets older.
During the second lecture on phonetic speech level, we learned that speech is an acoustic event, that we speak BECAUSE we hear, and that we speak WHAT we hear. So... it's important that our hearing impaired kiddos are properly amplified and that we acoustically highlight what we want them to hear. Practice sometimes makes permanent! We learned that all speech sounds can be taught and acquired through vocal play, and that we may not ever need to do speech drills with our kids. Lucas's SLT also conducted some speech assessments on Lucas, so we know exactly which sounds he can produce, which ones are still emerging, and which ones he cannot yet make.
The first afternoon session was on advanced auditory skills. We learned the four parts of auditory training are detection, discrimination, identification and comprehension. We learned 11 principles to auditory training, and were given a checklist of auditory skills to track our child's achievement, that we can continually reference.
The last lecture was on mainstream and inclusion, which we are very interested in. Although we are not even close to ready to think about Lucas entering Kindergarten, we are able to apply much of what we learned to transitioning him to preschool right now. We also got a helpful list of skills that hearing-impaired students need to succeed in the mainstream, and ways parents can help them. Mainstreaming is what we're working towards for Kindergarten.
After school we met with Ms. B., Lucas's classroom teacher. She is so wonderful, and we enjoy talking with her and hearing little anecdotal stories about Lucas. She really encouraged us to keep doing what we are doing (and more!). She seems very pleased with Lucas's PLOP (see yesterday's post) and feels that he will benefit from a preschool placement this fall. I'm so glad I have one lined up, you have no idea!
Lucas, of course, fell asleep after school today as soon as we got home, because he didn't nap at school. We let him sleep for just a little, then we headed to our favorite playground. We had dinner with some other families and then played on the lawn. Thursday will be our last full day.
day 12 and the IEP
I'm a little behind with my posts, but I'm trying hard to catch up. Tuesday was one of my favorite days that we've had so far. Today during morning circle time, Lucas got to be the teacher's helper. I think it's his favorite time. He certainly enjoys the attention. We started the day with support group and a lively discussion about the film that we saw yesterday and the meaning of the word "deaf" to various families.
Then we were off to participate in a school age panel of two successfully mainstreamed boys and JTC grads. This was the highlight of my day. My tears flowed, and I again hung on their every word. What struck me most was the sense of normalcy that these boys have. These early years are so full of wonder, doubt and simply the unknown. The boys were articulate, smart, funny, and oh so normal. Don't take that word the wrong way. I just mean that their hearing loss is just a part of who they are, what they do, what they like. It no longer drives everything they do, like it seems to when they're young. The one boy even said (when introducing himself): "Basically I lead a normal life and I carry my own weight." One interesting tidbit of information I learned was that the one boy shared that he doesn't know how loud he's being when he talks, so sometimes he has a little cue with his mom (that he came up with) to tell him to turn it down a little bit. They talked about their experiences with FM systems - one likes using it, and one doesn't. It was also interesting to hear that when they listen, they have to try to concentrate on one voice so that other sounds don't become too distracting. I thoroughly enjoyed the panel.
We checked in on Lucas before our afternoon sessions started, and but 1 of the six kiddos decided to take a nap for the second day in a row. I hope it's not a foreshadowing of the rest of the week! The topics for the afternoon were US laws and deafness and the IEP, both of particular interest to us as we embark on our first IEP adventure in the next few months. We were given resources and websites to reference and even saw a role play of what not to do. We got to see examples of binders that parents put together about their children for the IEP meeting. My wheels are turning as we speak and I prepare for this next journey. We learned lots of acronyms, my favorite being PLOP, Present Level Of Performance. That is one of the reasons why we're here, to determine his PLOP, so that we can move forward with plans.
We finished the day with a meeting with his SLT. We figured out that Lucas will work better if he's in a room with no distractions and has a snack to munch on. So, this session went much better.
Tonight we decided to head to Santa Monica again. We didn't hit the beach, but walked along the promenade and out to the pier. He enjoyed some of the little rides. We got to watch the sunset too.
Wednesday, July 28, 2010
an intense day 11
Like the post's title says, today was a pretty intense (but good) day. Lucas barely even blinked when we left, and he's not even attached to his blanket anymore. So EXCITING! The first session today was on behavior management for children with hearing loss, which I listened to very intently. Lucas is at that ripe old age of 2 1/2, where he starts to have his own ideas about the way things should be, so I was looking for some tips. The first tip I gained was prevention, prevention, prevention. If you can prevent the behavior by identifying triggers, adapting the environment, and rewarding good behavior as opposed to always focusing on negative behavior, it can cut down on behavioral issues. The second tip I got was to maintain realistic expectations based on a child's developmental level and needs. Expecting Lucas to sit still for 15 minutes while in circle time is not a realistic expectation, for example. We also learned 8 steps to effectively managing time out, and especially that it should not be seen as punishment per se, but rather as a chance for a child to calm down and self-regulate after performing an unwanted behavior. We made two experience books, one on positive behaviors and one on negative behavior for our children. This session was most beneficial to me!!
After a short break (and a little bit of spying on our kids), we gathered again for a session on expressive language. Since Lucas is doing so well with his expressive language, this lecture was particularly interesting to us. We got lots of ideas about how to encourage further, more sophisticated expansion of expressive language, such as always expanding what you say and adding new phrases, and exposing children to a variety of language environments.
We finished the day watching a documentary called Sound and Fury. We watched it during lunch, and then watched the follow-up to it, which was very helpful. I would go as far as to say that this film is an important part of every family's journey to a cochlear implant. Nate and I saw the film shortly after Lucas was implanted, and there are a few scenes that left a lasting impression. I think it's so important, because it portrays many different perspectives regarding the CI. It portrays deaf parents of deaf children, deaf parents of hearing children, and hearing parents of deaf children. The original film kind of leaves you hanging, but after seeing the follow-up, the story comes full circle. I recommend it if you haven't seen it. Although it is 10 years old, it still provides valuable perspective.
Someone in the group shared a quote today that she read somewhere that had inspired her - "dare to have the conversations with your hearing impaired child that you would have with your hearing child." It was kind of a reminder to continue to dream big.
We spent time with the other families out on the lawn tonight. Our days with them are winding down.
Sunday, July 25, 2010
LA weekend fun
We enjoyed a sunny weekend just hanging around LA! On Saturday we visited the Los Angeles Zoo. The zoo was super hilly and a lot of walking, but we had a great time. Lucas really soaked up a lot of great zoo language. He especially liked the giraffes and primates.
We spent a good 4 hours there, and were planning to see a few other attractions in Griffith Park - Travel Town and the Griffith Observatory, but alas, our little Lucas fell asleep. We kind of knew it would happen, and were glad he did, because he was pretty grumpy by the time we left the zoo. So, instead we drove around the park and looked at these sites from a distance, and then headed to Hollywood. We did a little sightseeing by car while Lucas slept. It was the perfect combination.
We got pretty close to the Hollywood sign. The GPS came in very handy again. I typed in "Hollywood sign" and it took us to this random neighborhood. We kept going and couldn't see the sign any longer. Somehow the GPS knew the exact last spot where you can see the sign before it disappears out of sight because of the mountains. Pretty cool, I thought.
Today we slept in and then went to a picnic hosted by a generous donor of the John Tracy Clinic. There was an In-N-Out burger truck there, with made-to-order burgers. They even made grilled cheeses for people, like me, who don't eat burgers. It was really yummy. There was also an ice cream truck with about 20 different hand-dipped flavors, a clown magician, face painting, games and lots of fun! It was a lovely afternoon spent with all the families and staff at the clinic.
Lucas got his face painted to look like a kitty cat (his choice). He sat so still!
After the picnic, we went with a few other families back to the California Science Center. We think we might still go back another time, because there's even more to see! What a great little gem in JTC's backyard! We had hoped Lucas would fall asleep on our walk there, but instead he fell asleep on our way back, which made bedtime interesting.
But, here I am, and Lucas is asleep. He excitedly asked me if he was going to see his friends tomorrow. I'm just wondering what we're going to do next week when he wants to see them then too. We just won't think about that just yet.
We spent a good 4 hours there, and were planning to see a few other attractions in Griffith Park - Travel Town and the Griffith Observatory, but alas, our little Lucas fell asleep. We kind of knew it would happen, and were glad he did, because he was pretty grumpy by the time we left the zoo. So, instead we drove around the park and looked at these sites from a distance, and then headed to Hollywood. We did a little sightseeing by car while Lucas slept. It was the perfect combination.
We got pretty close to the Hollywood sign. The GPS came in very handy again. I typed in "Hollywood sign" and it took us to this random neighborhood. We kept going and couldn't see the sign any longer. Somehow the GPS knew the exact last spot where you can see the sign before it disappears out of sight because of the mountains. Pretty cool, I thought.
Today we slept in and then went to a picnic hosted by a generous donor of the John Tracy Clinic. There was an In-N-Out burger truck there, with made-to-order burgers. They even made grilled cheeses for people, like me, who don't eat burgers. It was really yummy. There was also an ice cream truck with about 20 different hand-dipped flavors, a clown magician, face painting, games and lots of fun! It was a lovely afternoon spent with all the families and staff at the clinic.
Lucas got his face painted to look like a kitty cat (his choice). He sat so still!
After the picnic, we went with a few other families back to the California Science Center. We think we might still go back another time, because there's even more to see! What a great little gem in JTC's backyard! We had hoped Lucas would fall asleep on our walk there, but instead he fell asleep on our way back, which made bedtime interesting.
But, here I am, and Lucas is asleep. He excitedly asked me if he was going to see his friends tomorrow. I'm just wondering what we're going to do next week when he wants to see them then too. We just won't think about that just yet.
Saturday, July 24, 2010
Friday, day 10
Fridays at the John Tracy Clinic always go by so quickly! Since we are done at noon, and the kids neither eat lunch nor nap there, the morning just flies by. After spending the first hour with Lucas in his classroom, where we practiced the tip of the day (sandwiching a word by always beginning and ending with auditory-only input) we attended a session on informal speech acquisition. We discussed such ideas as using vocal play and the learn to listen sounds to encourage language acquisition.
We also got to see a video of Lucas and us working with his speech and language teacher. JTC has done a really great job of using our kids and our sessions with our SLTs to illustrate certain concepts that they are teaching us. They showed an example of an experience book that Ms. M. made for Lucas about locational prepositions, using his favorite stuffed bear, Knut to illustrate various locations. Nate and I were really nervous to see the video, because of how Lucas has been working for M. The presenter showed a segment of the video, where Lucas is completely off task, talking about leaving the room to dump the trash from the trash can into a trash truck (he saw one on the previous day behind his classroom), instead of talking about Knut sitting next to the trash can (as was in the book). Whereas Nate and I were a bit frustrated that Lucas would not stay focused on the book, she gave it a positive spin, showing how much more language the book led Lucas to use. It's always nice to have a different perspective.
We finished our short Friday with support group, where we were given the opportunity to write love letters to our kids. The idea was to write a letter to the older children in the sibling program, and those letters will be read aloud to the siblings next week. If you don't have a child in the sibling program (like us), then we wrote a letter to our children in the program. Nate and I both sealed ours up, and I will tuck them away in Lucas's baby book for a time when he is old enough to read them himself. I will be interested to read it myself again one day too.
After school, we had half a day to explore, but Lucas desperately needed a nap. So, he took a quick nap, then we headed to Exposition Park, which is within walking distant from our apartment, to visit the California Science Center. We were thoroughly impressed by this free museum. There's a rather new exhibit on the world's Ecosystems, and there is so much to do there for little ones like Lucas! One of the areas is a Kelp Forest, with a glass tunnel to walk through hosting kelp, sharks, eels and various fish. It was like a mini aquarium. Lucas thought it was pretty cool too.
We can't wait to go back next week, because we didn't have enough time to see it all. We made a trip to Yogurtland with one of the other families then and called it a night. We're really looking forward to next week, although we're a little sad that our time is winding down. Some topics that we're looking forward to are a school age panel of d/hh kiddos, U.S. laws and deafness, the IEP, and mainstream & inclusion. Stay tuned!!!
We also got to see a video of Lucas and us working with his speech and language teacher. JTC has done a really great job of using our kids and our sessions with our SLTs to illustrate certain concepts that they are teaching us. They showed an example of an experience book that Ms. M. made for Lucas about locational prepositions, using his favorite stuffed bear, Knut to illustrate various locations. Nate and I were really nervous to see the video, because of how Lucas has been working for M. The presenter showed a segment of the video, where Lucas is completely off task, talking about leaving the room to dump the trash from the trash can into a trash truck (he saw one on the previous day behind his classroom), instead of talking about Knut sitting next to the trash can (as was in the book). Whereas Nate and I were a bit frustrated that Lucas would not stay focused on the book, she gave it a positive spin, showing how much more language the book led Lucas to use. It's always nice to have a different perspective.
We finished our short Friday with support group, where we were given the opportunity to write love letters to our kids. The idea was to write a letter to the older children in the sibling program, and those letters will be read aloud to the siblings next week. If you don't have a child in the sibling program (like us), then we wrote a letter to our children in the program. Nate and I both sealed ours up, and I will tuck them away in Lucas's baby book for a time when he is old enough to read them himself. I will be interested to read it myself again one day too.
After school, we had half a day to explore, but Lucas desperately needed a nap. So, he took a quick nap, then we headed to Exposition Park, which is within walking distant from our apartment, to visit the California Science Center. We were thoroughly impressed by this free museum. There's a rather new exhibit on the world's Ecosystems, and there is so much to do there for little ones like Lucas! One of the areas is a Kelp Forest, with a glass tunnel to walk through hosting kelp, sharks, eels and various fish. It was like a mini aquarium. Lucas thought it was pretty cool too.
We can't wait to go back next week, because we didn't have enough time to see it all. We made a trip to Yogurtland with one of the other families then and called it a night. We're really looking forward to next week, although we're a little sad that our time is winding down. Some topics that we're looking forward to are a school age panel of d/hh kiddos, U.S. laws and deafness, the IEP, and mainstream & inclusion. Stay tuned!!!
Friday, July 23, 2010
crafty Thursday!
Lucas continues to not mind when we separate from him for school in the morning. It's almost a little offensive... just kidding. Today's schedule was a little bit switched up! We started the day with support group and a great idea sharing time. Then we had a session on children's books and experience books. It was very hands-on. Although we didn't completely create any experience books (due to lack of time), we saw many examples of them and made the skeleton to create one! Now we just have to add content.
Both books are pretty unique set-ups. The large, colorful one could be used to teach pre-reading skills. Each 1-inch flap that you see can have a sentence written on it that describes the picture. The example we saw was with dinosaurs. I'm still trying to think of a good idea for this one. The second book is made out of paper "lunch" bags, which are alternated and folded in half. The unique aspect of this book is that it provides pockets. Each page of the book could have a category, and then inside the pocket could be items (from clip art or something) that fall into that category. Some categories I thought of are: clothing, farm animals, beach, grocery store, tools, etc. This particular book only has 3 pockets, but you can just use more bags to create more pockets. I'm looking forward to playing with these books when we return home!
There was a Scholastic Book Fair all day today, and although it was tempting, I refrained from buying any books. It's not that I don't love books (or to shop for that matter), but I just didn't get any. I got some great ideas though! John Tracy Clinic was selling items with their logo on it, and I bought Lucas 2 hats. Too bad his head is too big for them. I will give them away... or maybe Oma can make them bigger? (That's a hint...)
The afternoon lecture was on speech and assessments. It was fun for Nate and me to get a refresher on linguistics and the International Phonetic Alphabet (IPA) that we had to utilize in grad school. We were given a chart with all of the speech sounds and at what age they are typically acquired by children. Some sounds are not expected to be solidified until a child is almost 10. I think some parents were breathing a sigh of relief, including us! It helped put into perspective speech why some kids struggle with some sound production.
We finished the day with part of a lecture on literacy and had an appointment with Ms. M., Lucas's speech and language teacher. He was a little better for her, and she started to assess his speech production so that we have a good idea about which sounds Lucas can produce and which are still emerging. I look forward to seeing the results!
This afternoon we decided to spend the afternoon at Hermosa Beach. Lucas enjoyed himself, as usual, even if he was very cold after swimming. It's a good thing his daddy likes to take him into the ocean! We saw a blimp, and Daddy buried him to his chin in sand. He thought that was pretty cool.
On the way home we found some more great Mexican food at a small restaurant called El Gringo. Best of all, Lucas ate his entire dinner and sat by himself the whole time. That hasn't been the norm lately, so we were delighted.
Wednesday, July 21, 2010
half way point
Today marks our half way point, and I just can't believe it! We had another busy day of learning, analyzing and sharing. We started our day with an appointment with one of the audiologists. I was concerned that Lucas would not cooperate in the booth, based on how he has been working for Miss M., but on the contrary, we got the best results we've ever gotten! I attribute that largely to the fact that JTC utilizes very skilled test aides in the booth who work closely with the audiologists to keep our kids focused (and entertained) on the task at hand. She had 6 different activities to do with Lucas that really kept his attention. Lucas showed aided responses of 20-25 dB across the board, which are results that we haven't yet seen. I'm so pleased.
She also tried to get some unaided responses from his left ear, but the results were varied, so we're going to try again another day. She did check his hearing aid though, and felt that it was set a little low, so she increased the settings a bit. We tried it on him again around 10 AM, and by the time we checked on him around noon, he had removed it, so I guess he still doesn't like it. I was trying to hold out a little hope that he might wear it if it was providing him with a little more benefit. We'll keep on trying. I can't really blame him though, if he's not hearing anything with it. He sure loves his CI though. He kept patiently asking for it in the booth while his left ear was being tested.
We were finished testing with enough time to participate in circle time with Lucas, then we said our good-byes and he didn't even CRY! What a big boy he has become in 8 short days.
This morning we had the amazing opportunity to listen to a panel of deaf adults speak about their experiences. I listened so intently to all of their words, and cried on occasion. I was most touched by the young JTC grad who is a senior in college. She was implanted as a child, and I just really hung on her every word, all of her experiences. Some of the insight I gained from them were tips on minimizing hearing difficulties. I learned that when in restaurants, they prefer to choose tables off to the side, with their backs to the wall, and stick with locations with ample lighting to facilitate lipreading. I learned that using the lapel mic from the CI kit can assist hearing in restaurants. I learned that while driving, they can't always hear an ambulance or where it's coming from, so they rely heavily upon visual cues to spot the flashing lights. Most importantly, I learned that they all want to be known as people first who have hearing difficulties, and not just deaf people. They don't like to let it define them. What a powerful 2 hours.
It was also my first experience with oral transliteration. An oral transliterator works with deaf and hard of hearing people to interpret communication. In contrast with a sign language interpreter, oral transliterators work with oral deaf people who don't use sign to communicate but utilize speech reading instead to access all information. The woman who transliterated sat right in front of me facing the panel and silently repeated (sometimes with gestures) what was being asked by the audience and what was being said by other members of the panel. One of the panel members also talked about her experiences using a transliterator and those of her daughter. It was fascinating to learn about even more options that our kids can have access to, if needed.
This afternoon we had another guest speaker - a local ENT who has been speaking to the JTC summer session parents for several decades. Amazing. He spoke about the importance of maintaining good ear health for our kids and answered many questions. He also shared his experiences as a father of a child with hearing loss. His perspective was very unique. We were able to ask him a question about Lucas's preaurical sinuses and whether we should be concerned about them. He further explained what they are, and how they are removed (if necessary) in more depth than we've ever been shown before. It was very helpful.
I'm looking forward to a session on children's books and experience books and a Scholastic book fair tomorrow (among other things)!
She also tried to get some unaided responses from his left ear, but the results were varied, so we're going to try again another day. She did check his hearing aid though, and felt that it was set a little low, so she increased the settings a bit. We tried it on him again around 10 AM, and by the time we checked on him around noon, he had removed it, so I guess he still doesn't like it. I was trying to hold out a little hope that he might wear it if it was providing him with a little more benefit. We'll keep on trying. I can't really blame him though, if he's not hearing anything with it. He sure loves his CI though. He kept patiently asking for it in the booth while his left ear was being tested.
We were finished testing with enough time to participate in circle time with Lucas, then we said our good-byes and he didn't even CRY! What a big boy he has become in 8 short days.
This morning we had the amazing opportunity to listen to a panel of deaf adults speak about their experiences. I listened so intently to all of their words, and cried on occasion. I was most touched by the young JTC grad who is a senior in college. She was implanted as a child, and I just really hung on her every word, all of her experiences. Some of the insight I gained from them were tips on minimizing hearing difficulties. I learned that when in restaurants, they prefer to choose tables off to the side, with their backs to the wall, and stick with locations with ample lighting to facilitate lipreading. I learned that using the lapel mic from the CI kit can assist hearing in restaurants. I learned that while driving, they can't always hear an ambulance or where it's coming from, so they rely heavily upon visual cues to spot the flashing lights. Most importantly, I learned that they all want to be known as people first who have hearing difficulties, and not just deaf people. They don't like to let it define them. What a powerful 2 hours.
It was also my first experience with oral transliteration. An oral transliterator works with deaf and hard of hearing people to interpret communication. In contrast with a sign language interpreter, oral transliterators work with oral deaf people who don't use sign to communicate but utilize speech reading instead to access all information. The woman who transliterated sat right in front of me facing the panel and silently repeated (sometimes with gestures) what was being asked by the audience and what was being said by other members of the panel. One of the panel members also talked about her experiences using a transliterator and those of her daughter. It was fascinating to learn about even more options that our kids can have access to, if needed.
This afternoon we had another guest speaker - a local ENT who has been speaking to the JTC summer session parents for several decades. Amazing. He spoke about the importance of maintaining good ear health for our kids and answered many questions. He also shared his experiences as a father of a child with hearing loss. His perspective was very unique. We were able to ask him a question about Lucas's preaurical sinuses and whether we should be concerned about them. He further explained what they are, and how they are removed (if necessary) in more depth than we've ever been shown before. It was very helpful.
I'm looking forward to a session on children's books and experience books and a Scholastic book fair tomorrow (among other things)!
JTC, day 7
This morning at the John Tracy Clinic we started with an appointment with Lucas's speech & language teacher, Ms. M. It was not the best session. Lucas has not been working for long periods of time for her, and seems to get off task pretty quickly. It's very strange, considering how well he works for his teachers at home. But again, he's in a new environment, so we take what we can get. We did get to talk to her alone about some of the testing that she has been conducting with him, and the results were pretty great. Expressively, he's testing at 2 years 6 months. And guess what, he's 2 years 6 months. This test is normed on hearing peers, so we're very pleased with those results. In terms of his receptive language, he only scored at 1 year 9 months according to the test, but we all believe that he must not have tested well, because there's no way for his expressive to be so far ahead of his receptive. It just doesn't work that way. After our meeting, we excitedly went to listen to a local CI surgeon and audiologist. It was really wonderful that they were willing to lend their time to educate us.
We were able to send questions in ahead of time, and I prepped them with my question about implanting Lucas's left ear. If you'd like to read about why Lucas doesn't have a second implant, you can read about it here. Basically, his CI surgeon believes there is too great a risk of complication with a second implant for him, because of a complication from the first surgery. But, I wanted a second/third opinion. The surgeon took the time to draw us a diagram explaining Lucas's cochlear malformation (which heightens the risk), and explained exactly how he would go about the procedure to minimize complications. He then told us that in his professional opinion that he would still implant. That was exactly the kind of information I was looking for. This man was so humble, yet so confident. I wish he could implant Lucas. He was kind enough to give us some guidance on how to proceed from here, so that's what we'll do when we return.
This afternoon we had a talk on auditory learning, and ways to increase acquisition of language through auditory-only means. Then we finished the day with support group. We have begun to change the format of our support group meetings to a bit of an idea sharing time, and it got a lot more people talking, including me. I was able to share with the group how I waterproof Lucas's CI for swimming. Many other families were very interested in the setup. Like I explained here, it has been a most beneficial experience for Lucas to be able to wear his ear in the water.
This afternoon, most of the families headed to that amazing playground I mentioned yesterday. There's a water area that the kids really enjoyed. Lucas was especially happy to play in the water! Here are a few pictures:
Then one of the families organized a take-out meal for everyone and we all gathered in the 3rd floor lounge. Afterwards many families played on the lawn next to the apartments. It was a great afternoon with all of the families and kids.
Tuesday, July 20, 2010
week 2 begins!
And week 2 begins! Thankfully Lucas settled back into his John Tracy Clinic routine quite nicely. We were concerned that the break of the weekend would affect his ability to separate from us today, but it did not. He woke up rearing a ready to go see his "friends", so we happily complied!
Today's tip of the day was to talk to your child like a sports commentator, to naturally talk about what he is doing, looking at or thinking about. Although we've always been told to narrate his activities, I've never thought of it as acting like a sports commentator before. Very clever!
This morning's session was on classroom acoustics. This topic was of special interest to us, because Lucas is about to start preschool. We learned some ways to optimize his listening environment such as eliminating flat surfaces in a classroom, using carpet to absorb sound, and eliminating frivolous sounds like an air conditioner or a fish tank.
We also learned about FM systems, both personal FM systems and sound field systems. All of JTC's classrooms are equipped with sound field systems, which facilitates listening for everyone. I don't believe that the preschool class for 2.5 year olds that Lucas is slated to attend in the fall is set up with a sound field, but I will have to check. Our other option is a personal FM for Lucas. Lucas's teacher would wear a microphone around her neck, and anything she says would be transmitted directly to Lucas's CI processor. Sounds ideal and great, huh? Yes and no. If it works properly, it will help him tremendously. But, the only way to test the functionality of the FM system with a CI is to reply upon the reporting of the child. We're not sure Lucas is there yet, despite his excellent expressive skills. Then again, he might be.
We missed the session on oral-peripheral motor structures and functions. Although this would have been informational (as are all of the topics), we have no concerns with Lucas's oral motor skills (feeding, speech production, etc.), so this was an okay time to miss. Instead, we had the opportunity to meet with a member of the counseling team as a couple. We had a beneficial session, and were thankful to take advantage of this service offered by JTC.
The other afternoon session was on sensory integration and behavior. I'm always worried about Lucas's behavior, but it was affirmed to me that most of it is just typical 2-year-old behavior. Additionally, I learned 2 very interesting points during the lecture. First was information on a study conducted on 48 hard of hearing children (all with varying degrees of hearing loss) all of which exhibited abnormal vestibular responses when tested. This was affirming to us, as several professionals have refused to relate Lucas's hearing loss to his balance issues, although we have always disagreed with them. Very interesting.
The second point relates to children with hearing loss often being more sedentary. It really makes sense. Hearing impaired kiddos spend lots of time in formal therapy, in the audiological testing booth, being asked to sit and listen, and being carted around from appointment to appointment in the car. Throw in some balance issues, which may cause kids to not want to run around and play, and you often have sedentary behavior. At the very least, this information has caused me to think about how much time Lucas spends running around and playing. I think it's a good thought to keep in the back of my mind.
Lucas was, of course, very happy to see us at the end of the day. It's always a nice feeling. :)
After school, I caught up on a wee bit of laundry and we headed to Ralphs to stock up on groceries for the week. In between we visited the most amazing playground with some of the other families, thanks to the recommendation of a mama from the first summer session. We will definitely be heading back there!
Unfortunately, this is round two of writing this post (somehow the other one never saved and wouldn't publish), so today's report will have to wait for tomorrow.
Sunday, July 18, 2010
a beach happy weekend
It was recommended that we take it easy this weekend, so that our kids are rested and ready for school on Monday, so we decided to spend some time at the beach. It got pretty hot this weekend, with a high of about 88 on Saturday. But, it didn't feel like 88 degrees. I've come to the conclusion that 88 degrees on the west coast and 88 degrees on the east coast are not created equal. I'll take west coast 88 any day of the week.
On Friday, our half day, we visited the Aquarium of the Pacific, just as planned. We spent a little over 2 hours navigating the 19 different habitats of the Pacific Ocean. Lucas spent a good portion of his time looking for Nemo, and he was pretty happy to encounter several Nemos...
The aquarium was a great language-rich experience, as we saw sharks, eels, turtles, sea lions, lots and lots of colorful fish, sea horses, jelly fish, starfish, giant crabs, among other things. We also learned that our little monkey (as a result of a "monkey see, monkey do" experience) can swing from a bar on his hands. We learn something new every day.
We walked around the Long Beach harbor a bit, then had dinner at Taco Surf in Belmont Shore. We're lucky to have a local tour guide to recommend such places to us. :)
On Saturday, we slept in (Lucas slept until almost 9:00!) and decided to go spend the day on the beach in Malibu. We enjoyed our drive north along the Pacific Coast Highway, with many breathtaking views. We did not spot any celebrities, although we enjoyed dreaming about who might live where. We stopped at Point Dume State Beach to set up camp. We packed lunches and spent several hours there. We also stopped at a little hardware store in Malibu and bought a beach umbrella. It was a very wise decision. Lucas thoroughly enjoyed himself in the "water" and "sandbox". It was actually there that Lucas was very clever with his newly learned songs. We sang "where oh where oh where is Lucas" and he responded, "right here in a sandbox!" So we sang that question to him several times this weekend and got many different answers like "right here in a white car," and "right here in Laurie's house". Lucas loved the sand and water. So clever!
It took us much longer to get home than anticipated, as we experienced the dreaded beach traffic on PCH. But, after showers and some relaxing in our apartment, we headed to Yogurtland. Oh my, that will not be the last time we visit there. 12 different favors of self-serve frozen yogurt, with 30+ toppings to choose from, at $.30 an ounce = lots of yummy (and pretty healthy) goodness. It's a shame that the closest one to us at home is in Florida.
On Sunday we decided to head to Pasadena (which is only about a 15 minutes drive) and visit the Kidspace Children's Museum. What a delight! We were expecting an indoor museum, but it was 75% outdoors! It's a good thing we were planning to go to the beach later and had brought Lucas's swim clothes along, because he had ample opportunity to romp around in water! Again, it was a great language experience, where Lucas learned about bugs and nature and had a lot of great hands-on experiences.
I'm so glad we decided to go! We left right after lunch to head to the beach, which coincided perfectly with his nap. We didn't hit as much beach traffic as yesterday, but we had trouble finding parking in Manhattan and Hermosa beaches, so we kept driving south and hit the beach in South Redondo instead. It was a lovely afternoon spent with Laurie and her hubby. And I still can't believe she lives that close to the beach.
We had a beautiful, relaxing weekend, and we are gearing up for week 2 at the John Tracy Clinic. Lucas woke up this morning asking "friends?" again. We read his experiences books before bedtime tonight, to familiarize him with his routine. I hope that tomorrow is full of smooth transitions for our little Lucas. He sure loves this place.
On Friday, our half day, we visited the Aquarium of the Pacific, just as planned. We spent a little over 2 hours navigating the 19 different habitats of the Pacific Ocean. Lucas spent a good portion of his time looking for Nemo, and he was pretty happy to encounter several Nemos...
The aquarium was a great language-rich experience, as we saw sharks, eels, turtles, sea lions, lots and lots of colorful fish, sea horses, jelly fish, starfish, giant crabs, among other things. We also learned that our little monkey (as a result of a "monkey see, monkey do" experience) can swing from a bar on his hands. We learn something new every day.
We walked around the Long Beach harbor a bit, then had dinner at Taco Surf in Belmont Shore. We're lucky to have a local tour guide to recommend such places to us. :)
On Saturday, we slept in (Lucas slept until almost 9:00!) and decided to go spend the day on the beach in Malibu. We enjoyed our drive north along the Pacific Coast Highway, with many breathtaking views. We did not spot any celebrities, although we enjoyed dreaming about who might live where. We stopped at Point Dume State Beach to set up camp. We packed lunches and spent several hours there. We also stopped at a little hardware store in Malibu and bought a beach umbrella. It was a very wise decision. Lucas thoroughly enjoyed himself in the "water" and "sandbox". It was actually there that Lucas was very clever with his newly learned songs. We sang "where oh where oh where is Lucas" and he responded, "right here in a sandbox!" So we sang that question to him several times this weekend and got many different answers like "right here in a white car," and "right here in Laurie's house". Lucas loved the sand and water. So clever!
It took us much longer to get home than anticipated, as we experienced the dreaded beach traffic on PCH. But, after showers and some relaxing in our apartment, we headed to Yogurtland. Oh my, that will not be the last time we visit there. 12 different favors of self-serve frozen yogurt, with 30+ toppings to choose from, at $.30 an ounce = lots of yummy (and pretty healthy) goodness. It's a shame that the closest one to us at home is in Florida.
On Sunday we decided to head to Pasadena (which is only about a 15 minutes drive) and visit the Kidspace Children's Museum. What a delight! We were expecting an indoor museum, but it was 75% outdoors! It's a good thing we were planning to go to the beach later and had brought Lucas's swim clothes along, because he had ample opportunity to romp around in water! Again, it was a great language experience, where Lucas learned about bugs and nature and had a lot of great hands-on experiences.
I'm so glad we decided to go! We left right after lunch to head to the beach, which coincided perfectly with his nap. We didn't hit as much beach traffic as yesterday, but we had trouble finding parking in Manhattan and Hermosa beaches, so we kept driving south and hit the beach in South Redondo instead. It was a lovely afternoon spent with Laurie and her hubby. And I still can't believe she lives that close to the beach.
We had a beautiful, relaxing weekend, and we are gearing up for week 2 at the John Tracy Clinic. Lucas woke up this morning asking "friends?" again. We read his experiences books before bedtime tonight, to familiarize him with his routine. I hope that tomorrow is full of smooth transitions for our little Lucas. He sure loves this place.
a short day 5
Wow, I can't believe the first week is over! Today we were finished at noon, and it really flew by. After spending the first hour with Lucas in the classroom, we had a session on behavioral regulation in children, and then support group, which I really look forward to.
Since all of the kids and teachers were outside when I said goodbye to Lucas today, I decided to take some pictures of the empty classroom. I blurred out some names and faces, in case you were wondering why the pictures look a little bit funny. Since Lucas is a bit more emotionally attached to me, I say good-bye first, and then Nate says good-bye. I get the easy job. Nate also leaves more easily. It works.
If you want a really great explanation of today's session on behavioral regulation in children, please see Leah's blog. She always recaps our topics really well. I thought the topic was very interesting, although it, of course, makes me a little paranoid about Lucas's self-regulating behavior. But, I'm happy that Lucas seems to be doing pretty well. This week was not easy for him with separating from us, but each day got easier, even to the point where he wouldn't get upset and cry during transitions on Friday like he did the rest of the week. I also think that some of the behavior he exhibits can just be contributed to the fact that he is 2. If he were 4 or 5 and still not transitioning well, etc. I would be concerned. I'm happy to see progress right now though.
I wanted to say a few words about support group. On days 1 & 2, we met as a large group of 18 families, and were each given the opportunity to tell "our story". It was therapeutic in and of itself to hear all the stories - to find families with which we have very similar experiences, and to understand more where other families are coming from and the daily challenges they face. On day 4, we were split into 2 groups to make it a little smaller. On days 4 & 5, we really had an open forum to talk about whatever was on our minds. I just listened and didn't say much. Nate and I are at a much earlier stage of our journey than many of the other families, and still have so much to learn, especially concerning school decisions. Lucas is the 2nd to youngest of the entire group of 18 at 2.5, and hasn't yet transitioned to preschool age, although that will occur soon.
Week one as John Tracy Clinic is over, and I feel like it has just begun!
Since all of the kids and teachers were outside when I said goodbye to Lucas today, I decided to take some pictures of the empty classroom. I blurred out some names and faces, in case you were wondering why the pictures look a little bit funny. Since Lucas is a bit more emotionally attached to me, I say good-bye first, and then Nate says good-bye. I get the easy job. Nate also leaves more easily. It works.
If you want a really great explanation of today's session on behavioral regulation in children, please see Leah's blog. She always recaps our topics really well. I thought the topic was very interesting, although it, of course, makes me a little paranoid about Lucas's self-regulating behavior. But, I'm happy that Lucas seems to be doing pretty well. This week was not easy for him with separating from us, but each day got easier, even to the point where he wouldn't get upset and cry during transitions on Friday like he did the rest of the week. I also think that some of the behavior he exhibits can just be contributed to the fact that he is 2. If he were 4 or 5 and still not transitioning well, etc. I would be concerned. I'm happy to see progress right now though.
I wanted to say a few words about support group. On days 1 & 2, we met as a large group of 18 families, and were each given the opportunity to tell "our story". It was therapeutic in and of itself to hear all the stories - to find families with which we have very similar experiences, and to understand more where other families are coming from and the daily challenges they face. On day 4, we were split into 2 groups to make it a little smaller. On days 4 & 5, we really had an open forum to talk about whatever was on our minds. I just listened and didn't say much. Nate and I are at a much earlier stage of our journey than many of the other families, and still have so much to learn, especially concerning school decisions. Lucas is the 2nd to youngest of the entire group of 18 at 2.5, and hasn't yet transitioned to preschool age, although that will occur soon.
Week one as John Tracy Clinic is over, and I feel like it has just begun!
Thursday, July 15, 2010
today is day 4
Today's tip of the day at the John Tracy Clinic was "Good morning Lings!" It was a reminder to practice the Ling sounds (ah, oo, ee, mm, sh, s) with your child every morning to make sure that they are hearing all the sounds of speech. Although we do Ling checks at home, we never used to do them in the morning (but rather at bedtime), so that was a good reminder.
Today was Lucas's best day so far (and should have been). Earlier in the week, he was having trouble transitioning from one activity to another, but today wasn't as bad. He seemed to be slightly less attached to his blanket and bear today, even being completely separated from them at lunch. I really dislike that he's dragging them around with him everywhere, because he doesn't do it at home, but if it helps to bring him comfort, then I am okay with it. He has even taken a nap e.v.e.r.y d.a.y at school this week. At home, he will only sleep in his own bed, but there must be something in the air here that all the kids are napping! I snagged this shot really quickly while Lucas was sleeping:
I think that the experience books that they created for us to share with our kids about their classroom routines and teachers/classmates are really helpful to Lucas. Not only am I reinforcing what his day is like, but he can also talk to me about the pictures and tell me who his "friends" are. Here's a glimpse at what the books look like:
He apparently is quite a character in class, making up his own rules sometimes. The teachers told me that he would try to get me to come back sooner by counting to 3 and saying "mommy?" He also let them know that someone else had a dirty diaper the other day, by saying "I smell stinky diaper". If only he would tell on himself...
We're noticing an improvement in his vocabulary already. He announced "I'm ready!" before we left for the beach yesterday, and his sentences are coming out more completed, including filler words like articles and prepositions that he seems to usually leave out. The songs they sing at school are also sticking with him. Every morning during circle time we sing a welcome song, and Lucas is starting to sing it too! We sing "where, oh where, oh where is Lucas... (x3)", then he sings "right here in our circle". Thoroughly impressed. He also knows the names of all of the kids in his class. He even awoke this morning and said "friends?", as if to ask if he were going to go to school today.
Tonight before bed I talked about his day with him to see what kind of information he could provide and then I guided him through the other events of the day. He said "1, 2, 3 mooommy, daaaddy" (that's what they do at the end of the day to call the mommies & daddies back into the room to pick them up). It was pretty funny that that's what he decided to share with me.
Today in our sessions, we did a lot on audiology. We got a demonstration on how the hearing aid equipment works, the types of hearing tests that are done and how to read an audiogram. My heart was a little heavy today talking about hearing levels and audiograms. Although I was interested in and grateful for the information, I somehow still mourn the year Lucas spent without any sound (even with his hearing aids) because of his truly profound loss. Before implantation & activation, we never really got any behavioral results to plot on an audiogram. I always hoped that every time we visited the audiologist, that we might be able to fill in something as evidenced here, here, and here. Without his cochlear implant, I'm not sure Lucas would have ever learned to listen and speak because he has no residual hearing at all to use. None. It's just another reason why his CI is such an incredible miracle for him. Really, there is no other word I can use to describe it. It is a medical miracle.
Later in the day we learned about different language assessments that are performed on our kids, when, how and why. We had another session with Lucas's SLT, Ms. M, and he wasn't too cooperative (mainly due to it being at the end of the day and he being totally done for the day). I hope that next week is better for him, but today he just would not play a ling game, even by being bribed with stickers.
Tomorrow we are done at noon, and then we are off to Long Beach to visit the Aquarium of the Pacific. I can't wait for all of the great new language opportunities that will arise!
I read a quote posted on the wall from Mrs. Tracy today that I've been thinking about all day long, so I'll close with this thought: "Everything a child sees and hears. everything he smells, tastes and touches, everything he experiences contributes towards language." ~ Louise Tracy
rewind to day 3
Sorry for no post yesterday, but I was totally spent. Since Lucas slept so poorly on Tuesday night, I was extra tired last night. When I put Lucas to bed, I fell asleep with him, and I didn't wake up again until late. I'm a bit more refreshed today. I think Lucas is adjusting to his schedule now, and his bedtime routine only took 1/2 an hour tonight!!! I still had to lie in bed with him until he fell asleep though. That's okay, I'll take it.
On day 3, Lucas separated a little bit more easily from us, and he didn't seem to be calling for me every time I watched him through the 2-way mirrored observation room. I was a little stressed out on Tuesday, because that seemed to be the case almost every time I looked.
We had sessions on receptive language, the anatomy & physiology of the ear (very interesting!), and the Parents Advise Learning Support (PALS) program. If you haven't ever looked into John Tracy Clinic's free distant learning courses for parents, and you have a child between the ages of 0 & 5, you should definitely do so. When Lucas turned 1, he got a special birthday letter, and every lesson we completed was followed up by a very personal e-mail. It's definitely worth your time, energy & effort, and I promise that you won't be disappointed.
We were also briefed about the sibling program. Although we have no other children (yet...), it was interesting to hear about all of the activities that go on with this program. It sounds like the siblings are getting just as much out of the school as the preschoolers. I'm so happy for the families with older siblings to have the opportunity to participate in this program!
The biggest thing that stuck with me today was the concept of "integrating listening into your child's personality." Obviously listening does not come naturally to our hearing impaired kiddos, and if we want them to acquire listening and spoken language, we need to do just that, to integrate listening into their personalities. I think Lucas is well on his way there, and I'm quite happy with that.
Tonight, we also went to Santa Monica to hang out at the beach. We stuffed Lucas, Leah & Nolan into the back of our Nissan Versa rental car and off we went to the beach! We all had a great time!
Then we stopped for *what else* but Mexican at Gilbert's El Indio. We really lucked out at this local gem, and it was most excellent. Thanks goes to Nate's iPhone for the recommendation and our handy GPS for getting us there. I'm not sure what we'd do around here without our trusty Garmin. It is very, very helpful. It's one of those gadgets you never knew you needed until you got one. Now I can't imagine traveling (or going on local Craigslist runs) without it.
We look forward to heading back to the beach this weekend!
On day 3, Lucas separated a little bit more easily from us, and he didn't seem to be calling for me every time I watched him through the 2-way mirrored observation room. I was a little stressed out on Tuesday, because that seemed to be the case almost every time I looked.
We had sessions on receptive language, the anatomy & physiology of the ear (very interesting!), and the Parents Advise Learning Support (PALS) program. If you haven't ever looked into John Tracy Clinic's free distant learning courses for parents, and you have a child between the ages of 0 & 5, you should definitely do so. When Lucas turned 1, he got a special birthday letter, and every lesson we completed was followed up by a very personal e-mail. It's definitely worth your time, energy & effort, and I promise that you won't be disappointed.
We were also briefed about the sibling program. Although we have no other children (yet...), it was interesting to hear about all of the activities that go on with this program. It sounds like the siblings are getting just as much out of the school as the preschoolers. I'm so happy for the families with older siblings to have the opportunity to participate in this program!
The biggest thing that stuck with me today was the concept of "integrating listening into your child's personality." Obviously listening does not come naturally to our hearing impaired kiddos, and if we want them to acquire listening and spoken language, we need to do just that, to integrate listening into their personalities. I think Lucas is well on his way there, and I'm quite happy with that.
Tonight, we also went to Santa Monica to hang out at the beach. We stuffed Lucas, Leah & Nolan into the back of our Nissan Versa rental car and off we went to the beach! We all had a great time!
Then we stopped for *what else* but Mexican at Gilbert's El Indio. We really lucked out at this local gem, and it was most excellent. Thanks goes to Nate's iPhone for the recommendation and our handy GPS for getting us there. I'm not sure what we'd do around here without our trusty Garmin. It is very, very helpful. It's one of those gadgets you never knew you needed until you got one. Now I can't imagine traveling (or going on local Craigslist runs) without it.
We look forward to heading back to the beach this weekend!
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