My older daughter Sydney, Peter, and I were picking up our "Happy New Year" cards at Costco yesterday (yes, we totally missed the Christmas card window this year), and I happened to see a boy with a bright yellow ear mold. I looked to check that it wasn't an earbud for music, and it was in fact a hearing aid. I didn't think much of it, but I smiled, and wondered if they had seen Peter's bright blue hearing aids. I don't want to stalk people with hearing loss, but there aren't that many young people that I see, so I figure a smile of solidarity is a happy medium.
We ended up behind the boy and his mom in the checkout line, and I saw he had a cochlear implant on the other side! I decided a little more than a smile might be OK...so I said to the mom that I noticed her son had a cochlear implant, and that mine was a candidate. She was friendly, and said her son had had hearing aids since age 2, and I think she said he lost all hearing in his right ear at 3 and got the cochlear implant then. I asked the boy if he liked his CI, and he said it helped a lot. He had slightly nasal speech, but it was completely understandable. Then I asked what brand CI he had, and they said Adcanced Bionics, and that they were so happy with the customer service. Advanced Bionics is the brand we are leaning towards, and hearing the boy say he was happy with it was like a little candle of hope, and it made me feel like we were on the right path.
All the hustle and bustle of the initial diagnosis, research, and getting hearing aids has subsided. The busy schedule of newborn-6 month doctor visits is done. Even the Early Start and School for the Deaf programs are on break right now. The lull is welcome, but also a bit strange. I felt like we had been swept into a calm pool when I was used to rafting the rapids. To make sure we didn't get stuck in the eddy I emailed Peter's ENT to see about scheduling the Pre-CI CT scan and possible MRI.
The CT scan is to check inner ear physiology, the MRI is just because he won't be able to have one after he gets the CI (at least not without removing the magnet in the internal part of the CI). We don't have to do the MRI, but they say if he is still sleeping after the CT they might as well get the additional images. Turns out Peter's Dr. is on vacation, but she emailed to let me know she would work on getting everything scheduled as soon as she got back. We should get a call from Radiology/Imaging in the second week of January! Another little bright spot:).
Sunday, December 30, 2012
Tuesday, December 25, 2012
Crawling!
When I figure out how to post a video I will! And he is a
Ready trying to pull up and get into mischief on the coffee table!
Wednesday, December 19, 2012
Milestone Note
Today Peter sat up all by himself! He is also crawling/belly flopping/ crawling :). Time to gate all the stairs! Luckily the gates which were out of stock last week are available again:the Everywhere Gate! And thank goodness for web shopping, because
getting out of the house with three kids to go to the mall is not my idea of fun this time of year.
Saturday, December 15, 2012
Was that a sign?
We have three dogs. They are always underfoot, trying to kiss the baby, or barking for their food. So they are a big part of Peter's daily experience. We use the sign for PEPPER for Pepper, a shaking ASL "L" for Lundon, and an ASL "3" into an ASL"T" for Trinity. Today Peter looked at Trinity and signed "T"!!! Maybe it was a total fluke. But, just like we do with babies babbling and getting excited when they sort of say a word, I ran over to Trinity and signed "T" and said (and signed) Yes!!!
Even if he didn't mean it, it was pretty cool to see that even a baby could make the T sign- which is thumb between first and second finger in a fist (like when your are saying "I got your nose!"). That would be a good first sign. The other day he made something that could be interpreted as a baby version of DADDY or DONKEY (insert joke here)- so I ran off to get a stuffed donkey since Daddy was at work. But since neither a donkey or Daddy was around when he did that, I am more inclined to think that was an accident.
Also Friday we went to the School for the Deaf, and even though I know Peter was tired, he stayed awake to watch everyone talk with their hands. He is always so happy when we are there! It will be interesting to see if more "finger babbling" is evident :)
Even if he didn't mean it, it was pretty cool to see that even a baby could make the T sign- which is thumb between first and second finger in a fist (like when your are saying "I got your nose!"). That would be a good first sign. The other day he made something that could be interpreted as a baby version of DADDY or DONKEY (insert joke here)- so I ran off to get a stuffed donkey since Daddy was at work. But since neither a donkey or Daddy was around when he did that, I am more inclined to think that was an accident.
Also Friday we went to the School for the Deaf, and even though I know Peter was tired, he stayed awake to watch everyone talk with their hands. He is always so happy when we are there! It will be interesting to see if more "finger babbling" is evident :)
Thursday, December 6, 2012
School, next year?!
The 30th of November we went for a second visit to a private Oral school about an hour from our house. I think that's where I want to take Peter for the 2013-2014 school year, but I needed to see more. I chose a great day for it! It was pouring rain so hard we got drenched just getting to the car. Traffic was miserable, gutters were overflowing, and I was worried about accidents. BUT that was the only day my mother-in-law would also be able to see the school, and I thought it was important for her to see for herself how well these kids were doing.
We were a little later than planned (no shocker with the weather). Originally we were going to watch some of their Friday music assembly for the whole school and parents. We only caught the end of one song, but the kids were all enjoying singing and clapping. Then there was story time, and the kids acted like any other kids- answering questions, laughing, even joking with each other. The director of the school found us and took us down to the toddler area. It's in another building, and it felt like we had to wade down a river to get there! But it was worth it to see the class in session.
There were two 23-month old kids who had been implanted recently (one just a couple months prior) and one hearing child, who was a staff member's child. There were another 2-3 kids who hadn't come due to the miserable weather, and I didn't think to ask their ages. In this class, two parents were helping out, and there was at least one aid, so each child was getting lots of attention and auditory input from the adult behind their chair, as well as the teacher.
The class was working on "containers" as an overall theme, and had different bags, and different objects in them to work with. One thing I noticed was the open-ended questions they used with the kids to allow as much communication as the kids were ready for. "What do you see?" was used instead of "what is this?" because then the child is always right, and can say lots of things they see on the object in question.
I was really amazed to find out that one child had only had their CI's active for a matter of weeks. Maybe the child had had some access to sound, or had lost hearing after having some, but he was already listening and starting to talk! I know that Peter will probably take more time before he talks, but he will also be much younger at activation.
My mother-in-law got to sit in for a while, too, and I know it really affected her to see these kids. She told my early start teacher, with tears in her eyes, that she finally felt like Peter "was gonna be OK".
Now comes the hard part- seeing how much, if any, the Early Start program can/will contribute towards the school costs. Also, the Oral School doesnt know what days of the week they will have toddler classes next year, as it depends on who enrolls, and how many. Whether we go for two days depends on how much funding and it also depends when they have the two days for toddlers. Since I want to keep going to the school for the deaf on Fridays, if the toddler class ends up being Wednesday and Friday I might see if we could just do Wednesdays. I really don't want that, though, for so many reasons. First, Wednesday is a short day at the public school up by my house, and I would not have any wiggle room to be home in time to meet the bus (as I fully plan on putting my homeschooled first grader back in school for second grade). Also, I need to figure out where my preschooler will be in school next year. If the Oral school has class Tues/Thurs then I can put her in a nearby drop-off preschool she liked. If the Oral school has class Mon/Wed, I can't pay for Samantha to go to that preschool three days a week, but only go two. If the Oral school classes are Wed/Fri....well, I don't know what I would do for Samantha. Maybe she'd get home-schooled next year....So much that I know I don't know. It doesn't make me philosophical, just crazy.
We were a little later than planned (no shocker with the weather). Originally we were going to watch some of their Friday music assembly for the whole school and parents. We only caught the end of one song, but the kids were all enjoying singing and clapping. Then there was story time, and the kids acted like any other kids- answering questions, laughing, even joking with each other. The director of the school found us and took us down to the toddler area. It's in another building, and it felt like we had to wade down a river to get there! But it was worth it to see the class in session.
There were two 23-month old kids who had been implanted recently (one just a couple months prior) and one hearing child, who was a staff member's child. There were another 2-3 kids who hadn't come due to the miserable weather, and I didn't think to ask their ages. In this class, two parents were helping out, and there was at least one aid, so each child was getting lots of attention and auditory input from the adult behind their chair, as well as the teacher.
The class was working on "containers" as an overall theme, and had different bags, and different objects in them to work with. One thing I noticed was the open-ended questions they used with the kids to allow as much communication as the kids were ready for. "What do you see?" was used instead of "what is this?" because then the child is always right, and can say lots of things they see on the object in question.
I was really amazed to find out that one child had only had their CI's active for a matter of weeks. Maybe the child had had some access to sound, or had lost hearing after having some, but he was already listening and starting to talk! I know that Peter will probably take more time before he talks, but he will also be much younger at activation.
My mother-in-law got to sit in for a while, too, and I know it really affected her to see these kids. She told my early start teacher, with tears in her eyes, that she finally felt like Peter "was gonna be OK".
Now comes the hard part- seeing how much, if any, the Early Start program can/will contribute towards the school costs. Also, the Oral School doesnt know what days of the week they will have toddler classes next year, as it depends on who enrolls, and how many. Whether we go for two days depends on how much funding and it also depends when they have the two days for toddlers. Since I want to keep going to the school for the deaf on Fridays, if the toddler class ends up being Wednesday and Friday I might see if we could just do Wednesdays. I really don't want that, though, for so many reasons. First, Wednesday is a short day at the public school up by my house, and I would not have any wiggle room to be home in time to meet the bus (as I fully plan on putting my homeschooled first grader back in school for second grade). Also, I need to figure out where my preschooler will be in school next year. If the Oral school has class Tues/Thurs then I can put her in a nearby drop-off preschool she liked. If the Oral school has class Mon/Wed, I can't pay for Samantha to go to that preschool three days a week, but only go two. If the Oral school classes are Wed/Fri....well, I don't know what I would do for Samantha. Maybe she'd get home-schooled next year....So much that I know I don't know. It doesn't make me philosophical, just crazy.
Saturday, December 1, 2012
Second Sound Booth Test
We went for Peter's second sound booth test the Monday after Thanksgiving. The girls came, too, and wanted to see the booth. Tara showed them how the Animals banged the drums when the sounds played. Peter laughed. I think he remembered.
When we sat down to do the test it seemed like Peter reacted to more noises, but he also seemed to be swiveling his head around to see if one box or the other would light up. He was also watching Tara VERY carefully through the window. He is so visually acute that it is hard to know what he heard and what he saw.
Tara thought she got a response at 70dB again, but again, it wasn't repeatable. She said she was hoping to see a response a little lower than 70, but couldn't be sure. We will try again in January.
When we sat down to do the test it seemed like Peter reacted to more noises, but he also seemed to be swiveling his head around to see if one box or the other would light up. He was also watching Tara VERY carefully through the window. He is so visually acute that it is hard to know what he heard and what he saw.
Tara thought she got a response at 70dB again, but again, it wasn't repeatable. She said she was hoping to see a response a little lower than 70, but couldn't be sure. We will try again in January.
Play Date with hearing aids
Friday after Thanksgiving we had a mom and her little guy over to play. The mom is hard of hearing and wears a hearing aid, and their little guy is just a bit older than Peter. The two boys have the same hearing aids, and similar hearing loss. The other little guy LOVED playing with the crinkly Mylar that our Early Start teacher gave us. He seemed to react to the sound more than Peter does....I hope it's only because he is a little older.
While the boys were rolling around, drooling on things, and grabbing crinkly things, I got to talk to the mom. She was raised to be Oral, and can lip read, and uses her hearing aid to help clarify what she sees. She learned ASL as an adult, and works using ASL now. I think she wishes she had learned ASL as a child, too. Knowing how sensitive the topic of CIs might be, I did say "if Peter gets CIs" that I wanted to continue to add to his ASL vocabulary, that I wanted to give him everything, every opportunity to learn and succeed. She said her mother in law really pushed them to get their son CIs, but they hadn't decided anything yet. She said that before she learned her baby was deaf she thought there would be no question- if they had a deaf baby that would be that, but now it's so much more complex. I don't envy them their decision. For Peter, I can embrace ASL, but our family speaks English (and some French and Spanish), and we want the same for him. When your family language is ASL it might be more complicated.
The mom was so great about helping me with my signs. I know it must take extra work to understand my attempts at ASL. I felt like I was back in Beginning Spanish, trying to express adult, complex thoughts in my two-year-old vocabulary ;)
I hope we get to see them again, soon. It will be good for Peter to grow up knowing deaf/hoh peers, even if they don't go to school together. Also, I really enjoyed getting to know the mom, and would like to get to know her better.
While the boys were rolling around, drooling on things, and grabbing crinkly things, I got to talk to the mom. She was raised to be Oral, and can lip read, and uses her hearing aid to help clarify what she sees. She learned ASL as an adult, and works using ASL now. I think she wishes she had learned ASL as a child, too. Knowing how sensitive the topic of CIs might be, I did say "if Peter gets CIs" that I wanted to continue to add to his ASL vocabulary, that I wanted to give him everything, every opportunity to learn and succeed. She said her mother in law really pushed them to get their son CIs, but they hadn't decided anything yet. She said that before she learned her baby was deaf she thought there would be no question- if they had a deaf baby that would be that, but now it's so much more complex. I don't envy them their decision. For Peter, I can embrace ASL, but our family speaks English (and some French and Spanish), and we want the same for him. When your family language is ASL it might be more complicated.
The mom was so great about helping me with my signs. I know it must take extra work to understand my attempts at ASL. I felt like I was back in Beginning Spanish, trying to express adult, complex thoughts in my two-year-old vocabulary ;)
I hope we get to see them again, soon. It will be good for Peter to grow up knowing deaf/hoh peers, even if they don't go to school together. Also, I really enjoyed getting to know the mom, and would like to get to know her better.
Subscribe to:
Posts (Atom)