I get asked about Bryces cochlear implant (ci) so I thought I'd sketch a picture. The boys have neuropathy. This means their signal is like a loose wire. It cuts in and out and the message isn't always received or its distorted.
Sunday, February 22, 2015
Bryce's Scripture in Primary
Bryce signed a portion of the scripture John 3:16 today in Primary. The ASL version (God, sent his son--why?--loved the world)
Bryce has a colonoscopy tomorrow morning. Not the best way to start the day but hopefully it will help us know what's going on in his body to help make potty training attainable.
Bryce has a colonoscopy tomorrow morning. Not the best way to start the day but hopefully it will help us know what's going on in his body to help make potty training attainable.
Saturday, February 7, 2015
Bryce's Teacher's Report
I called Bryce's teacher the other day. She gave me a report about how he's doing. I'm pretty sure I've said it before but I'll say it again. She's wonderful. Absolutely wonderful. She reaffirmed what we know that he had language. She shared examples how he knows the difference between "not" and "no". She said some of her 8 year olds still don't know the difference. He was going to put something in his backpack and he let her know he's "not" getting his lunch. hahahaha
She said he also can generalize things which is not something some of the kids can do. He is able to take concepts from songs and use them on other things. She said he's a problem solver and really tries to do things himself. It's cute how he takes anything he makes and beelines it to his backpack. He can't wait to bring it home and show me. (so sweet!)
I told her that we were making valentine cards (or filling them out) and he had a sucker in his bag. He let me know that it was "NOT for the busdriver". hahaha He must not have wanted to give her treats for Christmas.
It's exciting to see him learn and grow. I feel his sign improves as our sign improves. We still have a very long way to go but it's exciting to see him. I'm finding that not many parents learn sign language for their deaf kids. It means their progress is stunted because they don't get the reinforcement at home. I want Bryce to succeed. I want him to do his very best and I'll support him in reaching BEST.
I think I talked to his teacher for about an hour. Like I said, she's amazing. She's such a blessing! I loved hearing about what he's doing at school. It's true, most parents can talk to their kids about what they did that day. It's a little more challenging for us.
She said he also can generalize things which is not something some of the kids can do. He is able to take concepts from songs and use them on other things. She said he's a problem solver and really tries to do things himself. It's cute how he takes anything he makes and beelines it to his backpack. He can't wait to bring it home and show me. (so sweet!)
I told her that we were making valentine cards (or filling them out) and he had a sucker in his bag. He let me know that it was "NOT for the busdriver". hahaha He must not have wanted to give her treats for Christmas.
It's exciting to see him learn and grow. I feel his sign improves as our sign improves. We still have a very long way to go but it's exciting to see him. I'm finding that not many parents learn sign language for their deaf kids. It means their progress is stunted because they don't get the reinforcement at home. I want Bryce to succeed. I want him to do his very best and I'll support him in reaching BEST.
I think I talked to his teacher for about an hour. Like I said, she's amazing. She's such a blessing! I loved hearing about what he's doing at school. It's true, most parents can talk to their kids about what they did that day. It's a little more challenging for us.
Bryce's Speech and Language Evaluation at the Center for Hearing and Speech
Monday Bryce had his evaluation. I really liked the therapist that worked with us. She's quite smart and was fun to work with.Bryce was amazing for me till about half way through. When he's good, he's good. When he's not, he's terrible. I don't have a straight jacket so sometimes I am the straight jacket. I say this because he'll go into hitting and kicking fits. It's hard when we're out b/c I can't put him in his room for time out.
We went through a series of activities and he was good to try them. She sketched his ear and talked to me about the neuropathy. It's so hard to know. If they got on the other side of the lesion, he'll most likely have good success. If not, then he probably won't. We really won't know till we push ahead.
She did say she would expect with his prior language that he would be more progressed. She said there's factors that play into it as well. She said he may not be turned up (his device mapped) as much as it could be. She showed me different games to play with him. His brain has learned to think another way so now we need to reteach him to hear.
I have to be honest. It's hard. We live in an instant gratification society. Waiting and waiting and hoping...it's exhausting. I want to be hopeful and we plan to give it our best. We really don't know till we try so we will. It's just HARD sometimes. It's a lonely road to travel. I'm thankful this is an option but we spend so much time at doctor appointments and soon to be therapy, that we don't get to spend time doing other things. We don't get to play with friends like we want to. We don't get to participate in activities like we want to.
Okay, pity party over. Back to the eval. Bryce seemed to hear some things. She said it's important to try and introduce sounds when he's not visually distracted. She also said he's like a newborn. His hearing is very inconsistent. We've definitely seen this at home as he seems to respond sometimes and not other times.
Unfortunately this therapist is full so we'll get a different one. I hope she's a good fit. We're also going to switch our audiology to this location. TC is overwhelmed and we don't always get responses from them when we need to. We also pay $10 a time everytime we go and park in the garage. It's always packed and time is wasted waiting at the elevators.
We went through a series of activities and he was good to try them. She sketched his ear and talked to me about the neuropathy. It's so hard to know. If they got on the other side of the lesion, he'll most likely have good success. If not, then he probably won't. We really won't know till we push ahead.
She did say she would expect with his prior language that he would be more progressed. She said there's factors that play into it as well. She said he may not be turned up (his device mapped) as much as it could be. She showed me different games to play with him. His brain has learned to think another way so now we need to reteach him to hear.
I have to be honest. It's hard. We live in an instant gratification society. Waiting and waiting and hoping...it's exhausting. I want to be hopeful and we plan to give it our best. We really don't know till we try so we will. It's just HARD sometimes. It's a lonely road to travel. I'm thankful this is an option but we spend so much time at doctor appointments and soon to be therapy, that we don't get to spend time doing other things. We don't get to play with friends like we want to. We don't get to participate in activities like we want to.
Okay, pity party over. Back to the eval. Bryce seemed to hear some things. She said it's important to try and introduce sounds when he's not visually distracted. She also said he's like a newborn. His hearing is very inconsistent. We've definitely seen this at home as he seems to respond sometimes and not other times.
Unfortunately this therapist is full so we'll get a different one. I hope she's a good fit. We're also going to switch our audiology to this location. TC is overwhelmed and we don't always get responses from them when we need to. We also pay $10 a time everytime we go and park in the garage. It's always packed and time is wasted waiting at the elevators.
Sunday, February 1, 2015
Side by Side
I remember the first time I learned that Brayden had hearing loss and was becoming "deafened". I couldn't believe it. Where did this come from? The boys are about 5 years apart, yet there was a slight stagger of the onset. I still don't have answers to the why but it doesn't really matter. What matters, is they are happy and they're learning and overcoming their challenges.
My Zumba teacher, Erica, made a comment that I had never considered. She said, when she first heard about Bryce, she was sad for him. Poor little guy was all alone. He has his family but he was the only one with hearing loss. Then, Brayden started losing his hearing. She helped me see that they have each other. I'm seeing it more and more and feel thankful they do have each other.
When we were up at the church playing basketball, I snapped these pictures. Love them!
My Zumba teacher, Erica, made a comment that I had never considered. She said, when she first heard about Bryce, she was sad for him. Poor little guy was all alone. He has his family but he was the only one with hearing loss. Then, Brayden started losing his hearing. She helped me see that they have each other. I'm seeing it more and more and feel thankful they do have each other.
When we were up at the church playing basketball, I snapped these pictures. Love them!
Brayden's ARD
I had an ARD for Brayden on Friday. I've felt so confused on the path to take for him. He has a lot of language and pulling him to go to deaf seems not the exact fit. On the other hand, he's struggling or starting to struggle in Language Arts and Social Studies because of the oral difficulties that come with hearing loss.
I was delighted to learn that he will receive services from an itinerant. She will help him communicate how well he's hearing or not hearing. She'll help him with some possible sign. She'll help give him the tools to communicate his needs. At this time, they will no longer administer spelling tests for Brayden. While he's above grade level in his reading, his fluency has slowed down as well as comprehension. The AI (or auditory instructional specialist) explained that the same mechanism that controls speech and hearing also controls our speech thoughts. This might explain why Brayden has trouble focusing as well.
He's doing an amazing job in Math and Science. His teacher said she can't say enough good things about his strategies.
It's hard and continues to be hard to see him struggle with these challenges. I'm torn as a Mom because I want to snatch them up, toss them away and make things as they once were. Of course I don't have that kind of power but if I did, I'm pretty sure I would do it. I do find it amazing how both of my boys are handling their challenges. They continue to be an example to me. They are certainly graceful. There's no complaining about it and for the most part, they have great attitudes. At one point Brayden expressed concern about his speech changing. It has started to change. He does an amazing job with his compensating.
I had a sitter lined up for Brenlee but she fell asleep when I went up to help with boxtops (just before the ARD). I decided to go ahead and keep her with me. She's such an amazing baby and such a blessing. She woke up about half way through and just looked around and was chill. :)
I had to excuse myself early b/c I needed to leave in order to get home before Bryce's bus made it. If I miss him, I have to go back to the school to get him.
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