It's hard to believe that Drew will soon be 2 1/2 years old! With that comes a whole new area of hearing loss to navigate: the transition from Early Intervention to Individualized Education Plan (IEP). We are very fortunate that we know Drew will be on an IEP, as his hearing loss is profound enough to automatically qualify him. We do, however, need to decide on an appropriate preschool placement for him.
I came across this Preschool Placement Checklist for Children who are Deaf and Hard of Hearing. It seems like an excellent, objective way to evaluate all of you preschool placement options for your deaf or hard of hearing child.
We have scheduled three preschool tours in January, and look to make a decision on the placement we would like for Drew by our 180 day out meeting in March. I'm thankful that so many of our virtual friends will be going through this IEP process at the same time. I am hoping that we can all learn from each other!
Showing posts with label Education. Show all posts
Showing posts with label Education. Show all posts
Tuesday, December 9
Friday, November 14
Meet Me in St. Louis?
I mailed our registration today for the Parent Summer Workshop at The Moog Center for Deaf Education. This program, Helping Your Child Learn to Talk, runs from July 15 -19, 2009 at the Moog Center in St. Louis, MO.
We are really excited to return to Moog. It will be nearly three years, when the conference rolls around, since our last visit. We were in such a different place emotionally when we were last there. Having just learned of Drew's profound hearing loss hours before, we toured the school and talked with the director, and left with the hope we needed to carry on. I will be forever grateful for the information and direction they provided us in some of the darkest days of this journey.
I'm also really excited to show off our little guy and get an "outside" evaluation, from one of the top Oral Deaf Education program's in the country. I'm hoping they see him as the CI Superstar we do.
We are really excited to return to Moog. It will be nearly three years, when the conference rolls around, since our last visit. We were in such a different place emotionally when we were last there. Having just learned of Drew's profound hearing loss hours before, we toured the school and talked with the director, and left with the hope we needed to carry on. I will be forever grateful for the information and direction they provided us in some of the darkest days of this journey.
I'm also really excited to show off our little guy and get an "outside" evaluation, from one of the top Oral Deaf Education program's in the country. I'm hoping they see him as the CI Superstar we do.
Thursday, October 9
Improving Literacy Outcomes in Children who are Deaf or Hard of Hearing
Drew's Dad and I were finally able to attend Deaf Initiatives Navigating Your Child's Future presentation this past weekend. The presentation was supposed to take place back in March, but was postponed due to a snow storm.
One of the areas we have been concerned about is literacy. As the parent of a newly diagnosed child with hearing loss, it can be startling to learn that many deaf and hard of hearing individuals only reach a third to fourth grade reading level. I have learned that this is often because deaf or hard of hearing children are taught "whole word" reading, where they actually memorize the look of the word. Whereas, typical reading skills are developed by phonics, but required the ability to hear and say all 47 phenoms of the English language. With technology providing many options for proper amplification for our deaf or hard of hearing children, through cochlear implants and digital hearing aids, these outcomes will improve.
Karen Roudybush gave a wonderful presentation on "Bringing Literacy Home," which provided me with many activities and ideas on how to help establish a strong foundation for literacy. She shared with us that research demonstrates that the size of a child's vocabulary is a strong predictor of future reading skills, so it is important to develop a large vocabulary early on. Giving children rich language experiences throughout the day by telling and reading stories, describing the world around them and expanding on word choice (big, huge, giant, jumbo) are all ways to expand a child's vocabulary. She even gave us some activities that we can do to help expand our child's vocabulary:
One of the areas we have been concerned about is literacy. As the parent of a newly diagnosed child with hearing loss, it can be startling to learn that many deaf and hard of hearing individuals only reach a third to fourth grade reading level. I have learned that this is often because deaf or hard of hearing children are taught "whole word" reading, where they actually memorize the look of the word. Whereas, typical reading skills are developed by phonics, but required the ability to hear and say all 47 phenoms of the English language. With technology providing many options for proper amplification for our deaf or hard of hearing children, through cochlear implants and digital hearing aids, these outcomes will improve.
Karen Roudybush gave a wonderful presentation on "Bringing Literacy Home," which provided me with many activities and ideas on how to help establish a strong foundation for literacy. She shared with us that research demonstrates that the size of a child's vocabulary is a strong predictor of future reading skills, so it is important to develop a large vocabulary early on. Giving children rich language experiences throughout the day by telling and reading stories, describing the world around them and expanding on word choice (big, huge, giant, jumbo) are all ways to expand a child's vocabulary. She even gave us some activities that we can do to help expand our child's vocabulary:
- Write on several pieces of paper different words describing "something", for example: small, tiny, little, minute. Then have your child rank the different words in terms of which one is smaller than the other. To me, minute describes something very, very small, where as tiny would mean something a little bit bigger than minute. This expands on a child's vocabulary and gives them additional ways to describe something that is small.
- Grocery Shopping: She suggested that we always have a grocery list when shopping! (More work for me!) Hand the list to the child, complete with the word written out, and maybe a small sketch or drawing of the object. Then, have the child help you find the item in the store. This can be done even with very little children, and will help them learn to identify key grocery items, and expand their food vocabulary.
- Purchase small Dry Erase boards and place throughout the house. Write little notes on them each day for your children. Something like, "I love you!" or "School Today" will help children learn how to read (left to right, top to bottom) and will help them realize when letters are upside down and how letters are put together to form words and sentences.
She also gave several book selections that will help enhance vocabulary and literacy. There are many different types of books, so it is important to know what you want to work on when reading. For example, if you want to work with your child on sequencing of the days of the week, a book like Cookie's Week is excellent. She gave several selection idea. I know our family has some book shopping to do:
- For repetition: I Went Walking, Good Night Moon, Brown Bear, Brown Bear
- For Cumulative Sequence: The Napping House
- For Known Sequence: Cookie's Week, The Very Hungry Caterpillar, Grouchy Ladybug
Kathy also suggested reading books that revolve around daily routines, like bedtime, books about the changing seasons, classic stories, like The Three Bears or The Three Little Pigs, and series books, like Curious George. (Kohl's Cares for Kids is an excellent program, and is currently promoting the Curious George series. It is a great opportunity to purchase the books and toys at a great price, while giving back to the community.)
Monday, March 3
Cochlear Implants: Q & A
I have received several emails recently from parents of children newly diagnosed with hearing loss. I love the fact that this blog has allowed us to connect with other families all across the country (well, the world, really) that are going through similar experiences. Some of the questions I have received may be on the minds of others, so I thought I would post all of my answers here:
While I am sure genetic testing varies from one hospital to the next, our genetic testing was ordered by Drew's ENT. He ordered the test after our initial meeting as a result of Drew's hearing loss. Drew's testing was run when he was about six weeks old. The genetic test is called a "Comprehensive Hearing Panel" and consists of testing for Connexin 26, Connexin 30 and a specific gene mutation. These are the most common, non-syndromic causes of hearing loss that can be tested and are genetic.
Many people never find a cause of their child's hearing loss. It is believed that there are many genetic causes of hearing loss that have not yet been discovered, so if these tests come back negative, that does not mean that your child's hearing loss was not a genetic cause, just not anything they can test for. I would however strongly recommend having this test run because if your child's hearing loss was caused by one of these genetic causes, you can rule out other causes, some of which are syndromic.
In addition to the initial genetic testing, your ENT will order a CT scan or an MRI to check the anatomy of the child's' ears. After the CT scan or MRI, the ENT may elect to run further genetic testing. If it is found that the child has enlarged vestibular aqueducts, malformation of the inner ear or other anatomical abnormalities, there are specific genetic tests that can be run for syndromes that have these abnormalities, such as Pendred Syndrome. This is just one of many syndrome's associated with hearing loss.
The genetic testing has no relevance in your actual CI candidacy. The only thing it can give you is an idea of how well your child may do with a CI. Children with hearing loss caused by Connexin 26 are known to do very well with cochlear implants because they don't have any other known problems, such as with thier balance, kidneys, eyes, just to name a few. So you might get an understanding of the possible outcomes with a cochlear implant. For instance, if a child has Mondini or EVS, all electrodes might not go in the cochlea, so results can vary. Ultimately, the success of the child is in the hands of the parents. The surgeon and audiologist can only do so much. Without parent support, intervention and therapy, the child will never perform to his maximum potential.
There were several reasons:
First, bilateral cochlear implants are proven to help with sound localization and with hearing in noisy situations, two areas we felt were vitally important for children. Drew can hear what direction a car horn is coming from if he is playing in the street. Also, for children in noisy situations - classrooms, play grounds, Chuck E Cheese - they can hear much better. For example, we were having dinner at Roosters the other night and I was talking to the waitress, who is an audiology major at Ohio State, about Drew's cochlear implants. I was listing all of the words he can say and he was repeating them! He was sitting on the other side of the table, I was turned talking to the waitress and he could hear everything I was saying. I don't think this would happen with just one cochlear implant.
Second, we did not see the need to put Drew through two surgeries when we already knew we wanted Drew to have bilateral implants.
Third, if you do sequential implantation, meaning one ear after the other 3-6 months, or more, apart, there is a "big" ear and a "baby" ear. The new ear has to catch up. You have to do specific therapy to catch up that second ear because it has gone longer without auditory stimulation to the brain. We didn't want to do that. It is important to know that many parents did not have this option when their children were first implanted, as research into bilateral implants has only been around for about two years. When Drew was diagnosed we received mixed reviews on the medical necessity of bilateral implants. The whole concept was very new. Drew is only the second child in Ohio to receive bilateral implants. I have a feeling that many families would have chosen simultaneous implants if it would have been a choice at the time.
We have also, over the last eight months, run into other reasons why there is a significant advantage to bilateral cochlear implants.
Drew got zero, and I mean zero, benefit from his hearing aids. He never responded to anything with his hearing aids! Seriously, we got one response in the testing booth in over six months time. We never saw him respond to any environmental sounds at home (phone ringing, dog barking, doorbell). Every day that went by was one more day that Drew was not getting any auditory stimulation and one more day further behind in his development. Had Drew shown even the slightest benefit with his hearing aids we probably would not have pushed as hard as we did. (Although, seeing the results, I can't imagine not getting him implanted as young as possible). Once a child is 6 months old the complications of surgery reduce considerably, as the risk of anesthetic declines.
I was very persistent and direct with our ENTs on my expectation that Drew be implanted at eight months of age. I finally called each of the ENTs we were considering and asked them for a surgery date the first week of June for bilateral implants. One agreed, one did not. We would have gone to the end of the earth to get him implanted when we did. Travel distance to the implant center did not matter to us. We would have searched out skilled doctor after skilled doctor to have Drew implanted at that age.
The line between AV and AO is blurring.
Traditionally, AV believes in not allowing the child to do any lipreading, mainstreaming from the beginning (meaning there are no AV schools because they believe in putting the child in a preschool with typical, hearing peers) and the process of catching up a child's hearing age to their actual age happens without any special needs schooling.
Traditionally, AO allows you to see the lips of the person talking. In fact, AO used to encourage the use of lipreading as a means of communication, although I think that idea is fading as amplification options become better and better. In addition, with AO, the idea is to give the child intensive therapy from the beginning, in a special needs setting, so that the child can mainstream in school by kindergarten, or when the child is ready.
We are doing a combination of both therapy methods with Drew. In his therapy sessions we use a lot of AV, where we don't allow Drew to see our lips, making him perform all tasks with auditory input only. But in everyday life, Drew can see our lips. We also strongly believe in sending Drew to an oral preschool that will focus on his specific needs and give him a head start to mainstreaming in kindergarten. I would not feel comfortable sending him to a mainstream preschool. To me, that would be like giving up precious years that we can use to educate him with intense auditory and speech therapy.
Drew received his hearing aids when he was 10 weeks old. We did get loaner aids through our Regional Infant Hearing Program, because we knew that the hearing aids were likely not going to give Drew enough amplification to develop normal speech and hearing.
There is a mandatory hearing aid trial in order to develop candidacy for a cochlear implant, so the sooner your child receives hearing aids the sooner you can head down the CI path (if the aids aren't working). We had to wait 3 months from when we got the aids to begin down the path toward the cochlear implant, and this time frame may vary by program. We actually started the official cochlear implant process in March. We then had to do the candidacy process, which included meeting with a Social Worker, SLP, ENT and our audiologist. I had scheduled many of these appointments in advance to speed things up. The best advice I can give it to advocate for your child in order to move the process along. I went with the old saying, "The squeaky wheel gets the oil." I called the doctors office everyday to see if there were cancellations so that I could get Drew in for his evaluations sooner. I think that the receptionist got so sick of me calling everyday that she finally just gave me an earlier appointment.
There is a great Yahoo! Group: CI Circle. It is a group for parents with kids who have cochlear implants and for parents of kids in the cochlear implant process, although there are many professionals involved with the group as well. This group has been an excellent source of information for me throughout this entire process. This group was where I initially discovered that kids were being implanted under 12 months of age. They were also great with providing information on insurance companies that were providing coverage for bilaterals and for under 12 months of age.
If you have any recommendations or would like to expand on these questions, please leave a comment.
What genetic testing should I have run on my child now that he has been diagnosed with hearing loss? Do the genetic testing results have any relevance in regard to the treatment options? Did you see a geneticist or can an ENT order genetic testing?
While I am sure genetic testing varies from one hospital to the next, our genetic testing was ordered by Drew's ENT. He ordered the test after our initial meeting as a result of Drew's hearing loss. Drew's testing was run when he was about six weeks old. The genetic test is called a "Comprehensive Hearing Panel" and consists of testing for Connexin 26, Connexin 30 and a specific gene mutation. These are the most common, non-syndromic causes of hearing loss that can be tested and are genetic.
Many people never find a cause of their child's hearing loss. It is believed that there are many genetic causes of hearing loss that have not yet been discovered, so if these tests come back negative, that does not mean that your child's hearing loss was not a genetic cause, just not anything they can test for. I would however strongly recommend having this test run because if your child's hearing loss was caused by one of these genetic causes, you can rule out other causes, some of which are syndromic.
In addition to the initial genetic testing, your ENT will order a CT scan or an MRI to check the anatomy of the child's' ears. After the CT scan or MRI, the ENT may elect to run further genetic testing. If it is found that the child has enlarged vestibular aqueducts, malformation of the inner ear or other anatomical abnormalities, there are specific genetic tests that can be run for syndromes that have these abnormalities, such as Pendred Syndrome. This is just one of many syndrome's associated with hearing loss.
The genetic testing has no relevance in your actual CI candidacy. The only thing it can give you is an idea of how well your child may do with a CI. Children with hearing loss caused by Connexin 26 are known to do very well with cochlear implants because they don't have any other known problems, such as with thier balance, kidneys, eyes, just to name a few. So you might get an understanding of the possible outcomes with a cochlear implant. For instance, if a child has Mondini or EVS, all electrodes might not go in the cochlea, so results can vary. Ultimately, the success of the child is in the hands of the parents. The surgeon and audiologist can only do so much. Without parent support, intervention and therapy, the child will never perform to his maximum potential.
What made you so sure about having Drew simultaneously implanted? Furthermore, what made you feel that Drew needed two implants?
There were several reasons:
First, bilateral cochlear implants are proven to help with sound localization and with hearing in noisy situations, two areas we felt were vitally important for children. Drew can hear what direction a car horn is coming from if he is playing in the street. Also, for children in noisy situations - classrooms, play grounds, Chuck E Cheese - they can hear much better. For example, we were having dinner at Roosters the other night and I was talking to the waitress, who is an audiology major at Ohio State, about Drew's cochlear implants. I was listing all of the words he can say and he was repeating them! He was sitting on the other side of the table, I was turned talking to the waitress and he could hear everything I was saying. I don't think this would happen with just one cochlear implant.
Second, we did not see the need to put Drew through two surgeries when we already knew we wanted Drew to have bilateral implants.
Third, if you do sequential implantation, meaning one ear after the other 3-6 months, or more, apart, there is a "big" ear and a "baby" ear. The new ear has to catch up. You have to do specific therapy to catch up that second ear because it has gone longer without auditory stimulation to the brain. We didn't want to do that. It is important to know that many parents did not have this option when their children were first implanted, as research into bilateral implants has only been around for about two years. When Drew was diagnosed we received mixed reviews on the medical necessity of bilateral implants. The whole concept was very new. Drew is only the second child in Ohio to receive bilateral implants. I have a feeling that many families would have chosen simultaneous implants if it would have been a choice at the time.
We have also, over the last eight months, run into other reasons why there is a significant advantage to bilateral cochlear implants.
What made you decide to have Drew implanted at such a young age?
Drew got zero, and I mean zero, benefit from his hearing aids. He never responded to anything with his hearing aids! Seriously, we got one response in the testing booth in over six months time. We never saw him respond to any environmental sounds at home (phone ringing, dog barking, doorbell). Every day that went by was one more day that Drew was not getting any auditory stimulation and one more day further behind in his development. Had Drew shown even the slightest benefit with his hearing aids we probably would not have pushed as hard as we did. (Although, seeing the results, I can't imagine not getting him implanted as young as possible). Once a child is 6 months old the complications of surgery reduce considerably, as the risk of anesthetic declines.
I was very persistent and direct with our ENTs on my expectation that Drew be implanted at eight months of age. I finally called each of the ENTs we were considering and asked them for a surgery date the first week of June for bilateral implants. One agreed, one did not. We would have gone to the end of the earth to get him implanted when we did. Travel distance to the implant center did not matter to us. We would have searched out skilled doctor after skilled doctor to have Drew implanted at that age.
What is the difference between Auditory Verbal and Auditory Oral philosophies? I know there is an Auditory Oral school near us - is that successful as well from what you have heard?
The line between AV and AO is blurring.
Traditionally, AV believes in not allowing the child to do any lipreading, mainstreaming from the beginning (meaning there are no AV schools because they believe in putting the child in a preschool with typical, hearing peers) and the process of catching up a child's hearing age to their actual age happens without any special needs schooling.
Traditionally, AO allows you to see the lips of the person talking. In fact, AO used to encourage the use of lipreading as a means of communication, although I think that idea is fading as amplification options become better and better. In addition, with AO, the idea is to give the child intensive therapy from the beginning, in a special needs setting, so that the child can mainstream in school by kindergarten, or when the child is ready.
We are doing a combination of both therapy methods with Drew. In his therapy sessions we use a lot of AV, where we don't allow Drew to see our lips, making him perform all tasks with auditory input only. But in everyday life, Drew can see our lips. We also strongly believe in sending Drew to an oral preschool that will focus on his specific needs and give him a head start to mainstreaming in kindergarten. I would not feel comfortable sending him to a mainstream preschool. To me, that would be like giving up precious years that we can use to educate him with intense auditory and speech therapy.
How old was Drew when he received hearing aids? Were you able to use loaner hearing aids? I'm thinking my child will be 3-4 months of age before he receives his hearing aids through our states loaner program.
Drew received his hearing aids when he was 10 weeks old. We did get loaner aids through our Regional Infant Hearing Program, because we knew that the hearing aids were likely not going to give Drew enough amplification to develop normal speech and hearing.
There is a mandatory hearing aid trial in order to develop candidacy for a cochlear implant, so the sooner your child receives hearing aids the sooner you can head down the CI path (if the aids aren't working). We had to wait 3 months from when we got the aids to begin down the path toward the cochlear implant, and this time frame may vary by program. We actually started the official cochlear implant process in March. We then had to do the candidacy process, which included meeting with a Social Worker, SLP, ENT and our audiologist. I had scheduled many of these appointments in advance to speed things up. The best advice I can give it to advocate for your child in order to move the process along. I went with the old saying, "The squeaky wheel gets the oil." I called the doctors office everyday to see if there were cancellations so that I could get Drew in for his evaluations sooner. I think that the receptionist got so sick of me calling everyday that she finally just gave me an earlier appointment.
What forums would you recommend I join?
There is a great Yahoo! Group: CI Circle. It is a group for parents with kids who have cochlear implants and for parents of kids in the cochlear implant process, although there are many professionals involved with the group as well. This group has been an excellent source of information for me throughout this entire process. This group was where I initially discovered that kids were being implanted under 12 months of age. They were also great with providing information on insurance companies that were providing coverage for bilaterals and for under 12 months of age.
If you have any recommendations or would like to expand on these questions, please leave a comment.
Friday, January 18
Dr. Jacques Herzog - Cochlear Implant Surgeon
Back what seems like years ago, when we were totally in the dark as to the different ways we may be able to help Drew, we were fortunate enough to meet Dr. Jacques Herzog who is a cochlear implant surgeon in St. Louis.
We called upon many of our friends and family members to help us find information resources, and it just so happened that my uncle lived in St. Louis and knew Dr. Herzog. Because we were having a nightmare of a time getting a diagnostic ABR test scheduled for Drew in Columbus, we ended up driving all the way to St. Louis and got that test completed over a month before we would have been able to do it at home.
That morning we were saddened to discover that Drew was indeed profoundly deaf in both ears, but were grateful to work with an extraordinarily kind technician who comforted us. She then directed us to Dr. Herzog's office where he met with us and answered many "stupid" questions that we had. While his answers did not speak of a magical cure for deafness, we did feel comfortable knowing a bit more about the cochlear implant option.
Here is Dr. Herzog explaining Cochlear Implants:
Should you happen to live near St. Louis and you are considering a cochlear implant, I highly recommend visiting Dr. Herzog and also perhaps The Moog Center for Deaf Education. We did not get to visit the Central Institute for the Deaf (CID) but I have talked on the phone with an attorney in a very large law firm who attended CID as a child. He is completely oral, and told me he doesn't even remember being unable to talk. I actually had to ask him "what is your hearing loss?" His answer? "I don't know."
Amazing.
We called upon many of our friends and family members to help us find information resources, and it just so happened that my uncle lived in St. Louis and knew Dr. Herzog. Because we were having a nightmare of a time getting a diagnostic ABR test scheduled for Drew in Columbus, we ended up driving all the way to St. Louis and got that test completed over a month before we would have been able to do it at home.
That morning we were saddened to discover that Drew was indeed profoundly deaf in both ears, but were grateful to work with an extraordinarily kind technician who comforted us. She then directed us to Dr. Herzog's office where he met with us and answered many "stupid" questions that we had. While his answers did not speak of a magical cure for deafness, we did feel comfortable knowing a bit more about the cochlear implant option.
Here is Dr. Herzog explaining Cochlear Implants:
Should you happen to live near St. Louis and you are considering a cochlear implant, I highly recommend visiting Dr. Herzog and also perhaps The Moog Center for Deaf Education. We did not get to visit the Central Institute for the Deaf (CID) but I have talked on the phone with an attorney in a very large law firm who attended CID as a child. He is completely oral, and told me he doesn't even remember being unable to talk. I actually had to ask him "what is your hearing loss?" His answer? "I don't know."
Amazing.
Monday, May 14
Raise Your Hand!
Everyday in the US, approximately 1 in 1,000 newborns is born profoundly deaf, with another 2-3 of 1,000 babies born with partial hearing loss. While pregnant with Drew I worried about so many things, but not once did I ever worry about him being able to hear. Little did I know that it is the most common birth defect in the United States.
My life has been forever changed as a result of congenital hearing loss, but I have taken action to not let this hearing loss impact Drew's ability to communicate in the hearing world. There are amazing technological advances that people of all ages with hearing loss can take advantage of, but only if their hearing loss is properly diagnosed and treated.
May is Better Speech and Hearing Month and I recently learned of an awareness effort called "Raise Your Hand". If you have ever taken a hearing test yourself, you know that when you hear the tones in the headphones you raise your hand. If you or someone you know is dealing with the far reaching effects of a hearing loss, "Raise Your Hand" for better hearing and help do something about it!
My life has been forever changed as a result of congenital hearing loss, but I have taken action to not let this hearing loss impact Drew's ability to communicate in the hearing world. There are amazing technological advances that people of all ages with hearing loss can take advantage of, but only if their hearing loss is properly diagnosed and treated.
May is Better Speech and Hearing Month and I recently learned of an awareness effort called "Raise Your Hand". If you have ever taken a hearing test yourself, you know that when you hear the tones in the headphones you raise your hand. If you or someone you know is dealing with the far reaching effects of a hearing loss, "Raise Your Hand" for better hearing and help do something about it!
Monday, May 7
Please
Read this. Then you will understand why I feel the need to comment here.
. . .
Drew's Dad stumbled upon this blog post today about "Turn On My Ears" and he made the mistake tonight of letting me read it. I can not ignore this blog post, and feel the need to comment here.
I can imagine how "startled" I would feel if I simply read a few posts of someones blog and then proceeded to make assumptions and assertions from simply a few pieces of information.
First, if you would like to know where we came up with the name "Turn On My Ears," you can read this post. I personally like the name, as we are going to have the opportunity to take our perfect little boy and turn on his hearing, a moment that we will be able to witness (and video tape) for the first time!
Secondly, we started this blog when Drew was a little over six weeks old in November, 2006. He is, as I write this post, a little over seven months old, awaiting his simultaneous cochlear implant surgery. He will be eight months at the time of surgery and nine months when he is "turned on" for the first time. He will be eleven months old on August 24, 2007.
If you would like to know how a cochlear implant works (note it is cochlear implant, not cochlea implant), then you can read this.
Furthermore, we have taken all of the advice and education we have received from the specialists that are working with Drew. As we have learned from our teacher of the deaf through the Regional Infant Hearing Program, our therapists through Auditory Oral Children's Center and Columbus Children's Hospital, there is a lot of research that shows sign language is a great bridge to oral communication if established at birth. If you are interested in the communication, a.k.a. sign language, we have established to date with Drew, then read this.
Also, we have been quite clear and have understood from the very beginning that the cochlear implants alone will not allow Drew to communicate orally. It will take years of hard work and therapy to ensure that Drew will communicate orally and mainstream with his hearing peers. You can read posts on this subject here, here and here.
More than anything, Drew's Dad and I have made the decision to have Drew join the hearing world. We are his parents and we have to make decisions for both of our children that will give them the best opportunity to be all they can in this lifetime. We want him to hear us say "I love you". We want him to hear his big sister call him "Dew". We want our dog Eddie to wake him up with a bark. But more than anything we just want him to have all the abilities he needs to do what he wishes in this life. And "Turning On His Ears" will do that.
. . .
Drew's Dad stumbled upon this blog post today about "Turn On My Ears" and he made the mistake tonight of letting me read it. I can not ignore this blog post, and feel the need to comment here.
I can imagine how "startled" I would feel if I simply read a few posts of someones blog and then proceeded to make assumptions and assertions from simply a few pieces of information.
First, if you would like to know where we came up with the name "Turn On My Ears," you can read this post. I personally like the name, as we are going to have the opportunity to take our perfect little boy and turn on his hearing, a moment that we will be able to witness (and video tape) for the first time!
Secondly, we started this blog when Drew was a little over six weeks old in November, 2006. He is, as I write this post, a little over seven months old, awaiting his simultaneous cochlear implant surgery. He will be eight months at the time of surgery and nine months when he is "turned on" for the first time. He will be eleven months old on August 24, 2007.
If you would like to know how a cochlear implant works (note it is cochlear implant, not cochlea implant), then you can read this.
Furthermore, we have taken all of the advice and education we have received from the specialists that are working with Drew. As we have learned from our teacher of the deaf through the Regional Infant Hearing Program, our therapists through Auditory Oral Children's Center and Columbus Children's Hospital, there is a lot of research that shows sign language is a great bridge to oral communication if established at birth. If you are interested in the communication, a.k.a. sign language, we have established to date with Drew, then read this.
Also, we have been quite clear and have understood from the very beginning that the cochlear implants alone will not allow Drew to communicate orally. It will take years of hard work and therapy to ensure that Drew will communicate orally and mainstream with his hearing peers. You can read posts on this subject here, here and here.
More than anything, Drew's Dad and I have made the decision to have Drew join the hearing world. We are his parents and we have to make decisions for both of our children that will give them the best opportunity to be all they can in this lifetime. We want him to hear us say "I love you". We want him to hear his big sister call him "Dew". We want our dog Eddie to wake him up with a bark. But more than anything we just want him to have all the abilities he needs to do what he wishes in this life. And "Turning On His Ears" will do that.
Friday, May 4
Auditory Verbal Therapy
With Drew's surgery now scheduled and a much easier than anticipated insurance approval process behind us, I have now begun to seek out therapists that will help our hearing Drew learn to identify and listen to sound and eventually speak!
Right after his surgery was scheduled I began to get really nervous about the surgery itself. I think that focusing on the therapy has really helped me to keep the butterflies about the surgery itself buried, at least for now. In my efforts to get to the point of implantation I knew surgery was inevitable, but that doesn't make it any easier. I want my son to hear; to do so requires surgery. Do I wish we didn't have to go through this? Certainly, but I know on the other side of June 6th there is a world full of opportunity that will open for Drew with his cochlear implants.
We are taking a strictly oral approach for Drew's therapy and intervention. This leaves us with two choices of therapy: Auditory Oral and Auditory Verbal Therapy. We have decided to utilize the principles of the Auditory Verbal Therapy (AVT). The main reasons we have decided on this therapy are:
Right after his surgery was scheduled I began to get really nervous about the surgery itself. I think that focusing on the therapy has really helped me to keep the butterflies about the surgery itself buried, at least for now. In my efforts to get to the point of implantation I knew surgery was inevitable, but that doesn't make it any easier. I want my son to hear; to do so requires surgery. Do I wish we didn't have to go through this? Certainly, but I know on the other side of June 6th there is a world full of opportunity that will open for Drew with his cochlear implants.
We are taking a strictly oral approach for Drew's therapy and intervention. This leaves us with two choices of therapy: Auditory Oral and Auditory Verbal Therapy. We have decided to utilize the principles of the Auditory Verbal Therapy (AVT). The main reasons we have decided on this therapy are:
- AVT focuses on having children grow up in typical listening and learning environments, enabling them to become independent, participating, and contributing members of the mainstream.
- AVT is a family entered approach where parents are active participants in the therapy.
- AVT relies on building auditory skills without the ability to lipread, stressing the normal patterns of language development. These children gain spoken language skills equal to their hearing peers, have normal voice inflection and tone and learn the rules that guide spoken language.
While we will certainly incorporate pieces of the Auditory Oral approach, primarily the natural gesturing and lipreading all hearing people do in everyday setting. However, during Drew's therapy session there will be a focus on gaining information auditorally, instead of through auditory access and visual cues.
In addition to two hours of therapy a week, there is a toddler program at a new Oral Deaf Education School in Dublin. We will enroll Drew in the Parent-Toddler program one half day a week in January at the Auditory Oral Children's Center. This school utilizes the principles of AVT in their therapy sessions, but allows natural gestures in the classroom setting. This is a new program, showing the commitment within the cochlear implant team in Columbus to develop better resources for children with hearing loss.
Thursday, April 12
25% Budget Cut to the Regional Infant Hearing Program
We have learned that Governor Ted Strickland has proposed a budget cut to the Ohio Department of Health which will result in a 25% cut in funding for the Regional Infant Hearing Program in the state of Ohio. This RIHP is vital to families which include a child who suffers from hearing loss. It provides hearing impaired children and their families with education, un-biased communication options, therapy, and support. These services help these children develop the communication skills needed to attend school and eventually work and live alongside their hearing peers. We must realize that most families in Ohio do not have the personal resources to be able to seek out and employ the small number of persons or organizations trained in providing the deaf or hard-of-hearing with the best education and therapy that they need.
The services we have received so far through the RIHP have been nothing short of extraordinary! They have provided us with parent education, support groups, activities which help foster communication skills with our son, loaner hearing aids, among other services. The RIHP has provided all of these services to us free of charge, despite not having a budgetary increase since 2001. This is an absolute necessity to make sure that our deaf and hard of hearing children do not “fall through the cracks”.
This wonderful program will not be able to continue to provide these necessary services with the 25% budget cut. There is no doubt that the RIHP will be forced to cut vital services as a result of the lack of funding from the State, which will impair and delay the development of our hearing impaired children, and in turn impair our fine State for years to come.
We have contacted Governor Strickland regarding our sincere concern over these proposed budget cuts. If you would like, please contact Governor Strickland and ask him to secure the necessary dollars to prevent the 25% budget cut to RIHP. Early identification and intervention make all of the difference in the life of a child with hearing loss, and the citizens of Ohio need the Regional Infant Hearing Program to be there for them at full strength.
The services we have received so far through the RIHP have been nothing short of extraordinary! They have provided us with parent education, support groups, activities which help foster communication skills with our son, loaner hearing aids, among other services. The RIHP has provided all of these services to us free of charge, despite not having a budgetary increase since 2001. This is an absolute necessity to make sure that our deaf and hard of hearing children do not “fall through the cracks”.
This wonderful program will not be able to continue to provide these necessary services with the 25% budget cut. There is no doubt that the RIHP will be forced to cut vital services as a result of the lack of funding from the State, which will impair and delay the development of our hearing impaired children, and in turn impair our fine State for years to come.
We have contacted Governor Strickland regarding our sincere concern over these proposed budget cuts. If you would like, please contact Governor Strickland and ask him to secure the necessary dollars to prevent the 25% budget cut to RIHP. Early identification and intervention make all of the difference in the life of a child with hearing loss, and the citizens of Ohio need the Regional Infant Hearing Program to be there for them at full strength.
Tuesday, March 13
Back to the Drawing Board
What made us start questioning our decision to go to Cincinnati? We thought we had everything figured out. We have agreed to be a part of the research project Dr. Choo is doing at Cincinnati Children's. We have had all of Drew's diagnostic testing conducted in Cincinnati. Why the sudden change of heart, you may ask. We have begun to worry about the aggressiveness of the program in Cincinnati.
I went to a parent support group meeting a couple of weeks ago and was asked to talk about the things going on in Drew's world. I could think of nothing to say. Sure we put hearing aids in each day and do the activities we have been given through our early intervention program, but basically, we are doing nothing. We are enjoying our beautiful, fat, profoundly deaf baby boy. And while we cherish these precious moments, each day that passes is one more day that he can not hear. Why are we sitting around waiting to have an MRI and gain insurance approval for his surgery? Why can't Drew be implanted tomorrow? Why do we have to wait? And why have I not questioned this time frame issue more? As I pondered these questions, I asked myself, "Are we are being as aggressive with Drew's implants as we need to be?" I got home from the parent support group meeting and Drew's Dad and I questioned ourselves the rest of the day. The rest of the weekend. And we are still questioning ourselves today.
Drew's Dad and I have been very aggressive about everything regarding Drew's profound hearing loss from the beginning. (Are you surprised?) We have spent countless hours researching everything on profound hearing loss, cochlear implants and oral deaf education. We have traveled out of state for testing and visits to the top oral deaf education schools in the country. And through it all, we have learned that there is no one way to proceed forward. Cochlear Implant technology is evolving daily. There is no set course of action. The standard protocol changes from one implant center to another. Throughout all of this, one thing has remained constant: we need to utilize the best medical intervention available today.
In all of our research, we are certain that having Drew simultaneously implanted is by far the best choice. We also believe that having him implanted as early as possible will only further help him perform optimally with his implants. I contacted Dr. Choo about two weeks ago with our research and desire to have Drew implanted simultaneously. I could tell instantly that he was not comfortable with performing the surgery simultaneously by the long pause following my request. I do not want to push him into doing surgery on my son if he is not comfortable with this new, very aggressive procedure. While Dr. Choo is an excellent, excellent surgeon, he is not as aggressive as we would like in this field. His argument is that we need to see how Drew does with his first implant, and assuming he performs well, Dr. Choo will do a second implant between six months and one year after the first. Because we know Drew's hearing loss was caused by Connexin-26, we are certain that Drew will perform optimally with his implants, since hearing loss is the only trait associated with this genetic disorder. So waiting to have the second implant done in Connexin-26 children is only putting them through another, unnecessary surgical procedure.
In addition, I questioned the time frame that Dr. Choo would like to have Drew implanted. Why are we waiting to implant a child with profound hearing loss that is showing no benefit from his hearing aids? I do not see the need to wait until he is one year old. When I asked Dr. Choo about this, he again he not as aggressive as we would like. He sticks to the 11 month to one year time frame, as approved by the FDA, because there are some risks of additional bleeding with the softer skulls in infants. These risks are minimal and in our minds do not outweigh the need to get Drew hearing as soon as possible.
So we have questioned our decision to go to Cincinnati. And we have questioned why we are questioning ourselves. Just when we think we have made some difficult decisions, we go back to the drawing board and ask, have we made the best decisions for Drew? In this case the answer is "No." So we open doors we have previously closed, and in doing so, we have realized that we may have closed some doors prematurely.
I went to a parent support group meeting a couple of weeks ago and was asked to talk about the things going on in Drew's world. I could think of nothing to say. Sure we put hearing aids in each day and do the activities we have been given through our early intervention program, but basically, we are doing nothing. We are enjoying our beautiful, fat, profoundly deaf baby boy. And while we cherish these precious moments, each day that passes is one more day that he can not hear. Why are we sitting around waiting to have an MRI and gain insurance approval for his surgery? Why can't Drew be implanted tomorrow? Why do we have to wait? And why have I not questioned this time frame issue more? As I pondered these questions, I asked myself, "Are we are being as aggressive with Drew's implants as we need to be?" I got home from the parent support group meeting and Drew's Dad and I questioned ourselves the rest of the day. The rest of the weekend. And we are still questioning ourselves today.
Drew's Dad and I have been very aggressive about everything regarding Drew's profound hearing loss from the beginning. (Are you surprised?) We have spent countless hours researching everything on profound hearing loss, cochlear implants and oral deaf education. We have traveled out of state for testing and visits to the top oral deaf education schools in the country. And through it all, we have learned that there is no one way to proceed forward. Cochlear Implant technology is evolving daily. There is no set course of action. The standard protocol changes from one implant center to another. Throughout all of this, one thing has remained constant: we need to utilize the best medical intervention available today.
In all of our research, we are certain that having Drew simultaneously implanted is by far the best choice. We also believe that having him implanted as early as possible will only further help him perform optimally with his implants. I contacted Dr. Choo about two weeks ago with our research and desire to have Drew implanted simultaneously. I could tell instantly that he was not comfortable with performing the surgery simultaneously by the long pause following my request. I do not want to push him into doing surgery on my son if he is not comfortable with this new, very aggressive procedure. While Dr. Choo is an excellent, excellent surgeon, he is not as aggressive as we would like in this field. His argument is that we need to see how Drew does with his first implant, and assuming he performs well, Dr. Choo will do a second implant between six months and one year after the first. Because we know Drew's hearing loss was caused by Connexin-26, we are certain that Drew will perform optimally with his implants, since hearing loss is the only trait associated with this genetic disorder. So waiting to have the second implant done in Connexin-26 children is only putting them through another, unnecessary surgical procedure.
In addition, I questioned the time frame that Dr. Choo would like to have Drew implanted. Why are we waiting to implant a child with profound hearing loss that is showing no benefit from his hearing aids? I do not see the need to wait until he is one year old. When I asked Dr. Choo about this, he again he not as aggressive as we would like. He sticks to the 11 month to one year time frame, as approved by the FDA, because there are some risks of additional bleeding with the softer skulls in infants. These risks are minimal and in our minds do not outweigh the need to get Drew hearing as soon as possible.
So we have questioned our decision to go to Cincinnati. And we have questioned why we are questioning ourselves. Just when we think we have made some difficult decisions, we go back to the drawing board and ask, have we made the best decisions for Drew? In this case the answer is "No." So we open doors we have previously closed, and in doing so, we have realized that we may have closed some doors prematurely.
Monday, March 12
Columbus - We Don't Want to Leave
I feel like my life is in a constant state of fast forward. Between balancing two young children, work, home, doctors appointments, school intervention, family obligations, I hardly have time to sleep (and that has been rare recently, with Drew waking during the night). And just when I think things are about to go back to play mode, something happens that makes me stay in fast forward. For several months now, we have been certain that we were going to have all of Drew's surgery and habilitation done in Cincinnati. Now I believe that Drew will not be implanted in Cincinnati.
I am not sure if I have ever fully explained why we felt the need originally to search for surgeons and habilitation outside of Columbus. We have learned that there are three main areas to consider when deciding where to have Drew implanted: the cochlear implant surgeon, the audiology program and the oral deaf education school connected to the implant program. These three pieces of the puzzle will have to come together perfectly in order for Drew to receive the maximum benefit from his cochlear implants, and to reach our goal of having him mainstream at kindergarten with his hearing peers. These are the three things we are continuously investigating at area implant centers, and as we continue to do research, Columbus Children's just may offer the best for Drew after all.
Over the next several posts, I will try to explain why we initially felt Columbus could not provide Drew the best in each of these areas, and why we are starting to think that we made a premature decision. We are trying to make the absolute best decision we can for Drew, so while we think we have made excellent decisions for him to date, we will continue gather information and when needed we will rethink our decisions. We have no regret in changing our minds at any point along this journey. Our only objective is to do what is best for our son, and we feel confidant that the decisions we have made in the last few weeks are in Drew's best interest.
I am not sure if I have ever fully explained why we felt the need originally to search for surgeons and habilitation outside of Columbus. We have learned that there are three main areas to consider when deciding where to have Drew implanted: the cochlear implant surgeon, the audiology program and the oral deaf education school connected to the implant program. These three pieces of the puzzle will have to come together perfectly in order for Drew to receive the maximum benefit from his cochlear implants, and to reach our goal of having him mainstream at kindergarten with his hearing peers. These are the three things we are continuously investigating at area implant centers, and as we continue to do research, Columbus Children's just may offer the best for Drew after all.
Over the next several posts, I will try to explain why we initially felt Columbus could not provide Drew the best in each of these areas, and why we are starting to think that we made a premature decision. We are trying to make the absolute best decision we can for Drew, so while we think we have made excellent decisions for him to date, we will continue gather information and when needed we will rethink our decisions. We have no regret in changing our minds at any point along this journey. Our only objective is to do what is best for our son, and we feel confidant that the decisions we have made in the last few weeks are in Drew's best interest.
Wednesday, January 10
Baby Steps
We have doing activities with Drew on a daily basis to stimulate communication and to see if he is able to detect even the loudest of sounds with his hearing aids. We are enrolled in a monthly parent education program through the Columbus Hearing Impaired Program that gives us specific activities that can help stimulate his hearing. Our current project: sound detection. Without sound detection, we will not be able to move toward developing oral communication.
We were given several activities to help determine if Drew is getting even the slightest bit of benefit from his hearing aids. The results are not surprising to us: he is not detecting even the loudest of sounds. Our early intervention specialist told us that the majority of hearing impaired children are able to detect the beat of a very loud drum, so she sent us home with one last night. While we had fun playing with it and doing the activity with a very happy Drew, he had no idea what was going on. He just sat in his bouncy seat all smiles as we banged this drum in his ear. While it is discouraging not to see any reaction from your child as you pound on a drum less that a foot from his ear, we were not expecting any different response.
We have also been working on stimulating Drew's desire to communicate. We have "conversations" with him constantly, and every therapist that meets him is very impressed by his conversational tracking. This means that Drew is great with moving his eyes between your eyes and mouth as you speak to him. He makes excellent eye contact and will hold a conversation with you, meaning you speak, and then he will coo, grunt or squeal back at you. It is quite fun when he really gets into it! We are really encouraged by how well he is doing with his conversation at such a young age, given the fact that he has never heard a sound!
We had our first music class tonight. We enrolled in We Joy Sing as a recommendation of our early intervention specialist. She told us that a lot of hearing impaired children enjoy the vibration of the music and it stimulates interaction with other children around them. Well, Drew fell asleep! He couldn't hear anything with his hearing aids on, and they kept falling off, so we gave up! Luckily his big sister is the one officially enrolled in the class and she had a ball dancing and singing.
We're trying. One of these days an activity is going to work!
We were given several activities to help determine if Drew is getting even the slightest bit of benefit from his hearing aids. The results are not surprising to us: he is not detecting even the loudest of sounds. Our early intervention specialist told us that the majority of hearing impaired children are able to detect the beat of a very loud drum, so she sent us home with one last night. While we had fun playing with it and doing the activity with a very happy Drew, he had no idea what was going on. He just sat in his bouncy seat all smiles as we banged this drum in his ear. While it is discouraging not to see any reaction from your child as you pound on a drum less that a foot from his ear, we were not expecting any different response.
We have also been working on stimulating Drew's desire to communicate. We have "conversations" with him constantly, and every therapist that meets him is very impressed by his conversational tracking. This means that Drew is great with moving his eyes between your eyes and mouth as you speak to him. He makes excellent eye contact and will hold a conversation with you, meaning you speak, and then he will coo, grunt or squeal back at you. It is quite fun when he really gets into it! We are really encouraged by how well he is doing with his conversation at such a young age, given the fact that he has never heard a sound!
We had our first music class tonight. We enrolled in We Joy Sing as a recommendation of our early intervention specialist. She told us that a lot of hearing impaired children enjoy the vibration of the music and it stimulates interaction with other children around them. Well, Drew fell asleep! He couldn't hear anything with his hearing aids on, and they kept falling off, so we gave up! Luckily his big sister is the one officially enrolled in the class and she had a ball dancing and singing.
We're trying. One of these days an activity is going to work!
Thursday, December 14
Deaf and Proud to Use Sign Language - Link
This ABC News article discusses the debate between living life as deaf or with diminished hearing, or having technological assistance through the use of hearing aids or a cochelar implant.
One of the first things my wife and I noticed when learning about Drew's options was that many of the professionals we saw "danced around" certain topics, and wouldn't give thier opinions on certain things. At first we didn't understand why.
We have come to discover that (in our opinion) there is a pretty heated debate between those who believe in the use of cochlear implants and/or hearing aids, and those that do not. There is similar passion between those who believe in ASL (American Sign Language) as a sole means of communication and those who embrace Auditory-Verbal or Auditory-Oral communication.
In my limited experience so far, it seems that many people whom are deaf have a stong sense of being in the "deaf community", and some believe that it is disgraceful for another deaf individual to "turn thier back" on that culture by having cochlear implant surgery.
This article highlights the strong sense of community that many deaf people have, as well as thier great successes without technological assistance. I will post my opinions on the matter in a later post.
If you have an opinion, please leave a comment.
One of the first things my wife and I noticed when learning about Drew's options was that many of the professionals we saw "danced around" certain topics, and wouldn't give thier opinions on certain things. At first we didn't understand why.
We have come to discover that (in our opinion) there is a pretty heated debate between those who believe in the use of cochlear implants and/or hearing aids, and those that do not. There is similar passion between those who believe in ASL (American Sign Language) as a sole means of communication and those who embrace Auditory-Verbal or Auditory-Oral communication.
In my limited experience so far, it seems that many people whom are deaf have a stong sense of being in the "deaf community", and some believe that it is disgraceful for another deaf individual to "turn thier back" on that culture by having cochlear implant surgery.
This article highlights the strong sense of community that many deaf people have, as well as thier great successes without technological assistance. I will post my opinions on the matter in a later post.
If you have an opinion, please leave a comment.
Saturday, December 2
Ohio House Bill 431 - Link
One thing we are struggling with is our schooling options for Drew. Once he receives his implant (hopefully in less than 10 months!), we feel very strongly that Drew needs to be in a preschool program for children with only hearing loss. There are no programs in Columbus for children under age three, so right now we believe that he will be attending an oral deaf education school, Ohio Valley Voices in Cincinnati, three days a week.
By Ohio law, at age three education will become the financial responsibility of the school district in which we live, through a preschool special education program. Since there are not a lot of children with disabilities in the suburban school districts, these school districts all rely on the City of Columbus School District's AG Bell School to provide these services. While we have not yet visited this public school option, we have concerns because they service kids with disabilities in addition to their hearing loss. This means that the teachers will not be able to focus on hearing needs alone.
There is a bill before the Ohio House right now that, if it passes, will allow parents like us the option to choose schooling by use of a voucher. We are actively supporting this bill, since it would allow us to receive a scholarship voucher for Drew to attend the school of our choice, public or private. All of the oral deaf education preschools we have visited are private and not currently funded by the school districts, therefore leaving the financial responsibility to the parents.
We know that the schooling Drew receives once he is implanted and mapped will play the largest role in his ability to mainstream at kindergarten with his hearing peers. For this reason, we wholeheartedly believe that we should be able to choose how to allocate the funds available for Drew's education. Currently, those funds are only available for the public school option. With this bill, we would be able to allocate those funds to a school of our choosing, be it public or private. This would allow us to select a school that specializes only in educating children with hearing loss.
We ask you to look at this bill and contact your state representative to ask for his/her support of this important legislation.
By Ohio law, at age three education will become the financial responsibility of the school district in which we live, through a preschool special education program. Since there are not a lot of children with disabilities in the suburban school districts, these school districts all rely on the City of Columbus School District's AG Bell School to provide these services. While we have not yet visited this public school option, we have concerns because they service kids with disabilities in addition to their hearing loss. This means that the teachers will not be able to focus on hearing needs alone.
There is a bill before the Ohio House right now that, if it passes, will allow parents like us the option to choose schooling by use of a voucher. We are actively supporting this bill, since it would allow us to receive a scholarship voucher for Drew to attend the school of our choice, public or private. All of the oral deaf education preschools we have visited are private and not currently funded by the school districts, therefore leaving the financial responsibility to the parents.
We know that the schooling Drew receives once he is implanted and mapped will play the largest role in his ability to mainstream at kindergarten with his hearing peers. For this reason, we wholeheartedly believe that we should be able to choose how to allocate the funds available for Drew's education. Currently, those funds are only available for the public school option. With this bill, we would be able to allocate those funds to a school of our choosing, be it public or private. This would allow us to select a school that specializes only in educating children with hearing loss.
We ask you to look at this bill and contact your state representative to ask for his/her support of this important legislation.
Tuesday, November 14
Visiting a School for the Deaf
The doctors and audiologists have told us that our son has a profound hearing loss. They have given us an idea of medical things Drew will be going through over the next several months: immediate fittings for bilateral hearing aids, multiple hearing screenings, surgery for cochlear implant(s), aural therapy, speech therapy, year round schooling, to name a few. All of these things are done with the goal of Drew mainstreaming into the school system by kindergarten.
But can all of these things really develop my son's oral communication? I need to have a realistic expectation of what all of this hard work can do. Visiting an oral deaf education school would give me just that.
I visited The Moog School for the Deaf in St. Louis. It gave me hope. Hope, something that I didn't think was possible just a few days earlier. It was so inspiring to see deaf children communicate with each other, their teachers, even me through speech. I saw them count. I saw them read. I saw them listening to my words. They responded to my questions. They were doing things that all of their hearing peers do - laughing, yelling down hallways, screaming in delight, arguing about "who goes first", talking while the teacher was talking. They were normal!
For any parent that has a child with a profound hearing loss, a visit to an oral deaf school will give you the hope you need to carry on. It did for me.
But can all of these things really develop my son's oral communication? I need to have a realistic expectation of what all of this hard work can do. Visiting an oral deaf education school would give me just that.
I visited The Moog School for the Deaf in St. Louis. It gave me hope. Hope, something that I didn't think was possible just a few days earlier. It was so inspiring to see deaf children communicate with each other, their teachers, even me through speech. I saw them count. I saw them read. I saw them listening to my words. They responded to my questions. They were doing things that all of their hearing peers do - laughing, yelling down hallways, screaming in delight, arguing about "who goes first", talking while the teacher was talking. They were normal!
For any parent that has a child with a profound hearing loss, a visit to an oral deaf school will give you the hope you need to carry on. It did for me.
Monday, November 13
Intitial Research
Ever since Drew's diagnois, my ear has been glued to the phone. So many people to call, so many recommendations about how to tackle this challenge. So many different opinions. I think that the one thing I have learned is that everyone in this field has their own belief on what we should do for Drew and how we should educate him. My husband and I do, too.
I want my son to communicate and live in the hearing world. Why wouldn't I? That is the world that I live in. It is the world that his Dad, sister, grandparents, aunt, and uncle's all live in. Why do I feel like so many people in this field are pushing us toward total communication? If I hear, "any communication is good communication" one more time I might get sick.
I have seen first hand that children with profound hearing loss, with the right intervention through an oral deaf education program, can live in the hearing world. That is my goal. My only goal. His family's only goal. And until someone tells us that there is a medical reason to think otherwise, it is the only thing we are going to focus on.
I want my son to communicate and live in the hearing world. Why wouldn't I? That is the world that I live in. It is the world that his Dad, sister, grandparents, aunt, and uncle's all live in. Why do I feel like so many people in this field are pushing us toward total communication? If I hear, "any communication is good communication" one more time I might get sick.
I have seen first hand that children with profound hearing loss, with the right intervention through an oral deaf education program, can live in the hearing world. That is my goal. My only goal. His family's only goal. And until someone tells us that there is a medical reason to think otherwise, it is the only thing we are going to focus on.
Subscribe to:
Posts (Atom)
