Back in late October, we had C tested for Pendred Syndrome. As a part of diagnosing his hearing loss, he had an MRI that showed a misshaped cochlea and an enlarged vestibular aqueduct. These are both signs of Pendred Syndrome. Pendred is a genetic disorder that causes hearing loss and, in some cases, an enlarged (but normally functioning) thyroid. It is a recessive disorder which means that a person with Pendred had to inherit the mutation from both parents. As is turns out, C does in fact have Pendred. Apparently both F and I are carriers. Less than 10% of people with a genetic hearing loss have Pnedred. You can read more here: http://www.nidcd.nih.gov/health/hearing/pages/pendred.aspx
Now that we know why C has a hearing loss, we can better predict his future (at least the part relating to his hearing!). Is is likely that he will lose his hearing entirely as he grows. This really just further cements our decision to focus on ASL as his means of communication.
Monday, February 10, 2014
Thursday, December 19, 2013
Decsions, decsions
C has had all of his evaluations and, since he officially turned three last week, has been dismissed from the ECI program. As we expected, the school district recommended that he attend their all day, five day a week preschool program for children who are hard of hearing. We declined. They offered to let him attend part time. After much discussion, we declined that as well. Their last offer was walk in speech therapy and AI therapy. This one was a bit tougher.
We have pretty much reached the conclusion that we are going to give up on C's hearing aids, at least for now. They are not showing any real signs of helping and he continues to seriously dislike using them. There is also the issue of forcing him to try and be something he isn't...a hearing person. There is a lot of debate in the deaf/hard of hearing community about hearing aids. As with cochlear implants, it is often said that it is best left up to each person if they want to try some type of device to improve their hearing. Clearly if we are not going to push the hearing aids, AI therapy is a non-issue. AI therapy is designed to help people learn to listen with their devices. Without the hearing aids, it is unlikely that Collin's speech will ever improve. We are fine with this as we have come to the conclusion that C will most likely use ASL as his main communication. As a family, we have begun to learn to sign. It is going to be a slow process, but with hard work, we think we will be able to provide C with a quality education at home just like we do with our other two kids. So, we decided to turn down all therapy services from the schools.
In the meantime, I have been researching options for C once he is ready for school. There are not a lot of options out there, at least that I have found, but there are a few things. I am also probably going to find or make cards to hang around the house that shows the signs for things like letters, numbers, colors, and shapes, That is something that I normally would have been working with C on by now, but with his issues, he is a bit behind. We know he is smart, however, and will be able to catch him up.
We have pretty much reached the conclusion that we are going to give up on C's hearing aids, at least for now. They are not showing any real signs of helping and he continues to seriously dislike using them. There is also the issue of forcing him to try and be something he isn't...a hearing person. There is a lot of debate in the deaf/hard of hearing community about hearing aids. As with cochlear implants, it is often said that it is best left up to each person if they want to try some type of device to improve their hearing. Clearly if we are not going to push the hearing aids, AI therapy is a non-issue. AI therapy is designed to help people learn to listen with their devices. Without the hearing aids, it is unlikely that Collin's speech will ever improve. We are fine with this as we have come to the conclusion that C will most likely use ASL as his main communication. As a family, we have begun to learn to sign. It is going to be a slow process, but with hard work, we think we will be able to provide C with a quality education at home just like we do with our other two kids. So, we decided to turn down all therapy services from the schools.
In the meantime, I have been researching options for C once he is ready for school. There are not a lot of options out there, at least that I have found, but there are a few things. I am also probably going to find or make cards to hang around the house that shows the signs for things like letters, numbers, colors, and shapes, That is something that I normally would have been working with C on by now, but with his issues, he is a bit behind. We know he is smart, however, and will be able to catch him up.
Tuesday, November 5, 2013
Research, therapy, and evaluations, oh my!
C has been receiving speech therapy since the summer through our state's Early Childhood Intervention program. Since we signed him up shortly before he discovered his hearing loss, it was just assumed that with the speech therapy alone, we would probably be able to get him talking. Since we found the hearing loss, he has been getting AI (audiology intervention) therapy as well. I have to say that, overall, I don't see a whole lot of results coming from these visits. Each therapist comes once a week for a 45 minute visit.
I do like his speech therapist. She is more willing to work with C in a way that fits his personality. His AI therapist isn't as good, in my opinion. She actually works with the public school district in a near by city that has a deaf education program. Her visits are what I consider to be more rigid. She expects C to sit and participate for the whole time. That is just not who he is. It honestly leaves a little bit of a bad taste in my mouth for school based therapy programs. As homeschoolers, we are accustomed to working with our children is a way that works best for them. If that means sitting at a table doing workbook pages, fine. If it means letting them run around the living room while listening to a story, fine. It is one of our biggest gripes about the public school setting. Kids are forced to conform to someone else's idea of how a child learns best. I understand that they have to have some type of control in their classrooms sine there are so many different kids to deal with at one time, but we have the luxury to not have to conform to a whole group.
Since C will be turning three next month, we are starting the process of getting ready for him to leave the ECI program. After three, children who still need services are turned over to the school district. Sine our school district does not have a deaf education program, it is highly likely that they are going to want C to go to the district in the other city that his AI therapist works with. This is actually about 45 minutes away from us. Not exactly close.
C will have an evaluation done on Monday with people from our local district as well as people from the 'near by" district. They will then make a recommendation for services. What they are likely to recommend is that he attend the "near by" school for three hours a day, five days a week. Hubby and I have already decided that this is not an option we are comfortable with. We will see how wiling they are to work with us. If they aren't, well, we will just keep him home.
I have spent some time researching deaf education. Even though hearing loss in children is one of the most commonly occurring birth defects, there is not a lot of information out there on how to home educate a deaf or hard of hearing child. I have a feeling that there just are not a lot of us out there. If you want information on how to educate a child with various types of autism, ADHD, dyslexia, OCD, processing disorders, etc., there is a lot of good information. Hearing loss and deafness...not so much. Of course, the only real subject that you need a truly unique approach to is reading. A deaf child obviously can't be tought phonics like I taught my other kids. I have come across a few methods of teaching reading to a deaf child and hopefully will gain a better understanding in the next few years. Thankfully, we have a little time before it becomes an issue. Right now, we will be focusing on C's communication. We are going to learn to sign as a family and will continue to have him wear his hearing aids. Hopefully, we will start to see an improvement in his communication skills soon.
I do like his speech therapist. She is more willing to work with C in a way that fits his personality. His AI therapist isn't as good, in my opinion. She actually works with the public school district in a near by city that has a deaf education program. Her visits are what I consider to be more rigid. She expects C to sit and participate for the whole time. That is just not who he is. It honestly leaves a little bit of a bad taste in my mouth for school based therapy programs. As homeschoolers, we are accustomed to working with our children is a way that works best for them. If that means sitting at a table doing workbook pages, fine. If it means letting them run around the living room while listening to a story, fine. It is one of our biggest gripes about the public school setting. Kids are forced to conform to someone else's idea of how a child learns best. I understand that they have to have some type of control in their classrooms sine there are so many different kids to deal with at one time, but we have the luxury to not have to conform to a whole group.
Since C will be turning three next month, we are starting the process of getting ready for him to leave the ECI program. After three, children who still need services are turned over to the school district. Sine our school district does not have a deaf education program, it is highly likely that they are going to want C to go to the district in the other city that his AI therapist works with. This is actually about 45 minutes away from us. Not exactly close.
C will have an evaluation done on Monday with people from our local district as well as people from the 'near by" district. They will then make a recommendation for services. What they are likely to recommend is that he attend the "near by" school for three hours a day, five days a week. Hubby and I have already decided that this is not an option we are comfortable with. We will see how wiling they are to work with us. If they aren't, well, we will just keep him home.
I have spent some time researching deaf education. Even though hearing loss in children is one of the most commonly occurring birth defects, there is not a lot of information out there on how to home educate a deaf or hard of hearing child. I have a feeling that there just are not a lot of us out there. If you want information on how to educate a child with various types of autism, ADHD, dyslexia, OCD, processing disorders, etc., there is a lot of good information. Hearing loss and deafness...not so much. Of course, the only real subject that you need a truly unique approach to is reading. A deaf child obviously can't be tought phonics like I taught my other kids. I have come across a few methods of teaching reading to a deaf child and hopefully will gain a better understanding in the next few years. Thankfully, we have a little time before it becomes an issue. Right now, we will be focusing on C's communication. We are going to learn to sign as a family and will continue to have him wear his hearing aids. Hopefully, we will start to see an improvement in his communication skills soon.
Saturday, October 12, 2013
Getting Started
So I have had this blog account for a while now...over a year, in fact. You will notice this is the first post. Why, you might ask? Because I just never got around to doing it! Things change, however, and I am going to try to keep up with this, especially as a way of keeping track of our journey with our youngest child, C.
We are a homeschooling family. The oldest child, Rocker Girl (RG for short!) is 14. The middle child, The Bug, will be 7 in January. C will be three in December. RG and Bug are doing fine with their schooling. C will present more of a challenge. We discovered a few months ago that he has a significant hearing loss. He is essentially deaf in his right ear and has a moderate loss in his left ear. He just got hearing aids, but as you can imagine, he does not like wearing them. We are planning on home educating him. Now I know that I will probably get some flack for this, but we feel it is truly the best option for our family. Does that mean that I have any idea how to educate an almost deaf person? Not really! It is made slightly more difficult by the fact that he does not talk due to the hearing loss. We are hoping that we can get him used to the aids and he will learn to speak. We are also going to learn sign language as a family as a back-up in case he ends up losing his hearing entirely or the aids just don't work. Since home schooling a child with a hearing loss is not as common, I figured I would use this a way of keeping track of our progress and maybe help others along the way.
We are a homeschooling family. The oldest child, Rocker Girl (RG for short!) is 14. The middle child, The Bug, will be 7 in January. C will be three in December. RG and Bug are doing fine with their schooling. C will present more of a challenge. We discovered a few months ago that he has a significant hearing loss. He is essentially deaf in his right ear and has a moderate loss in his left ear. He just got hearing aids, but as you can imagine, he does not like wearing them. We are planning on home educating him. Now I know that I will probably get some flack for this, but we feel it is truly the best option for our family. Does that mean that I have any idea how to educate an almost deaf person? Not really! It is made slightly more difficult by the fact that he does not talk due to the hearing loss. We are hoping that we can get him used to the aids and he will learn to speak. We are also going to learn sign language as a family as a back-up in case he ends up losing his hearing entirely or the aids just don't work. Since home schooling a child with a hearing loss is not as common, I figured I would use this a way of keeping track of our progress and maybe help others along the way.
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