When a parent learns that their baby or young child has a hearing loss, they are often left feeling alone and unsure what to do. We've been there and done that with one Deaf child already, and we've just started the journey again with our newborn son. In addition, we learned our baby also has NEHI, a rare form of childhood lung disease. We hope that sharing our experiences will help inspire and encourage other parents of children with hearing loss or who may also have NEHI.
Sunday, January 16, 2011
More Adventures in Liam Land
The great thing about raising kids is that each day is a new adventure. Lately it seems that most of my adventures have to do with poop. Poop under his fingernails, poop ground into my carpets, poop in his hair, poop smeared on the bottom of the bathtub, and occasionally even some poop in a diaper or two.
Luckily there has been more to our adventures than just poop. We got a snow day this past week, and all the kids got to try out sleds for the first time in their cute little lives. Other than the part where Liam fell face down into the snow and was too bundled up to be able to stand again, I think he really enjoyed it. He squealed with delight each time we'd go down the hill together.
Liam is also doing better and better (though not completely better) about wearing his hearing aids, too. I'm not sure what benefit he's getting from them right now, but I do know he's doing better. That alone is something to be excited about.
In other news, we finally have a date for him to get his tonsils and adenoids out and new tubes put into his ears. February 8th he's scheduled to get it all done, and then we can move on to monitoring his hearing so we can decide when and if we're going to get him a cochlear implant. It feels like time has sort of stood still for him the last few months, and at the same time it seems to have just flown by. It's crazy how life does that sometimes.
So there you have it. Poop, snow, and tubes are about all the adventures we've been having around here. It's not much to some, but it's life in general for us.
Labels:
ear tubes,
hospitalizations,
Liam,
tonsils
Thursday, January 6, 2011
Liam Has His Person
When we first moved here, one of my major concerns was whether or not my children would fit in and feel loved and close to people like they did in Texas. Each of my kids had their own special "person" who loved them in a special way that was different from their peers. I don't think it's even so much that each one had someone who favored them, but maybe that's just what it was. More than anything, it was that they each had someone who loved and understood them unconditionally.
Aiden had Angela. CJ had quite a few people, but I think his heart really belonged to Jim. It still does for that matter. Rachel has Gabriella. They've been bonded since Rachel was about 6 days old. Drezden had Linda. He loves his Linda. He also had his Ms. Buffy or Buppy as he preferred to call her. All four of my oldest children had someone who was there for them when it mattered most and who I knew would be a lifelong friend for them. There was some comfort in knowing that they each had an adult mentor in their lives who loved and cherished them.
Liam had people who adored him, most especially Linda (Jim's wife), but she couldn't come with him and hold his hand and guide him through the difficult transition from TX where everyone in the ward knew and loved him to this new place with a big new ward and no one who really knew and understood him. Liam was the one who weighed most heavily on my heart when it came to really needing "his person" and not really having one here. While he does have his Kassidi, he still needed something a little more. I worried that that person wouldn't come or that they'd come too late.
His first few weeks of nursery at church were awful. He had a sweet and dedicated teacher, but she was extremely pregnant and the classroom was simply too small for the number of children in there. When Liam came in, he was all over the place. He was like a little tornado on two feet. There was nothing even remotely successful about those first weeks in nursery and I would come home and just cry every Sunday after church. I dreaded going. I knew we needed to be there, but I hated knowing that he was "that one kid" that every teacher dreads having show up. His teacher never showed any dislike for him and never said one unkind thing, but I know he was more than a little challenging for her.
About five weeks after moving here, the nursery was split and Liam was moved to the younger nursery along with about six other kids. His class had been cut more than in half AND they had their own space. That alone was a huge blessing. Still, there was something more profound that happened that week. Sister Meier was called to be one of his two nursery leaders.
I remember vividly my first impression of Debra. She seemed so poised and put together. And she smiled a lot. Really, a lot, but not the cheesy kind of smile that hurts your face at the end of the day. She has the kind of smile that shows a sort of contentment with life and a genuine joy in being where she happens to be in that moment. If you've ever seen that kind of smile, you know what I'm talking about. I had spoken a little bit with her in weeks previous to her being called to Liam's nursery because she was a substitute one Sunday. I'd been asked to be in there whenever he was there so that he could only terrorize half the children rather than all of them. She shared a little about her life and her family. She talked about how she loved being with the little ones since her youngest was twelve now. She'd home schooled all of her children and really loved being with them. I remember taking a huge sigh of relief when her name was read off as his new teacher because I knew she'd at least be able to tolerate him and maybe even enjoy him a little.
When I dropped him off in the new nursery that first Sunday, I went to climb over the gate so that I could stay with him like I'd been asked all the previous weeks. She stopped me and said she could handle it and would let me know if she needed me. I sat through all of Sunday School and Relief Society jerking my head to look toward the door every time it opened fully expecting her to bring him to me and ask him not to come back unless it was in hand cuffs. She never came. I went to pick him up and she smiled and said something to the affect of "Well, he sure is active and eager to experience what's going on around him. We have some work to do, but I think he's going to do great." That was the first Sunday in many that I didn't come home and bury my head in my pillow and just cry.
It's been a few months now, and Liam is thriving with her. She smiles every single Sunday and greets him happily. She's "learned him". She has mastered the art of predicting what he's going to do and being one step ahead of him at all times. She knows he's going to rifle through anything at his level, so she makes sure the only toys and papers at his level are safe for Liam to play with. She puts the trash can up high where he can't reach it. She figured out that he eats all the crayons laying idol on the table, so each kid gets one crayon only making it much more challenging for him to get to eat one. She and Sister Lidell (the other teacher, who is equally as wonderful) have even taught him how to use a crayon to scribble. He's so proud of this accomplishment! She recognized that he wants to eat but has some oral sensory issues, so she keeps bananas and cold cuts (his two favorite treats of all time) on hand for him.
With her help and tremendous patience, Liam is even sitting a little bit during lesson time. She asked about his hearing aids, so I taught her how to use them. He gets to hear in class now!! Granted, it's short lived most of the time, but it's a start.
We happened to be at another friend's birthday celebration at a restaurant and Sister Meier got the luck of sitting next to Liam at the table. Anyone who has ever had the honor of dining with him knows this kid will have lots of first dates, but second dates will come once in a blue moon unless he improves his table manners. I could be wrong, but it seemed that she genuinely enjoyed his company. They had a bond. He is eager to please her and get her attention. She knew and noted things about him and his personality that I thought I only had noticed. She laughed at the funny things he did rather than being frustrated with it all.
As much as she has done for Liam, she has also done so much for me. There is no greater comfort than knowing your child isn't just being tolerated, but that he's being loved. I know she must go home exhausted every single Sunday. I know she must crave grown-up conversation. Instead, she gets Liam. In exchange for her sacrifice each week, I get the little break I need. I get to enjoy some much needed spiritual feeding while at the same time feeling pride in the fact that I know someone else can see that my child is lovable. I don't have to feel ashamed by how wildly active he is, or by the fact that he doesn't pay much attention to the lesson, or that he prefers to eat the play-doh rather than sculpt with it. I know she is delighting in his little accomplishments as much as I am, and I am so grateful for that.
So, Liam has found his person at least for now. And me? I have found peace of mind and joy in worshiping at Sunday services. Thank you, Sister Meier. You will never truly know what a blessing you have been to our family.
Aiden had Angela. CJ had quite a few people, but I think his heart really belonged to Jim. It still does for that matter. Rachel has Gabriella. They've been bonded since Rachel was about 6 days old. Drezden had Linda. He loves his Linda. He also had his Ms. Buffy or Buppy as he preferred to call her. All four of my oldest children had someone who was there for them when it mattered most and who I knew would be a lifelong friend for them. There was some comfort in knowing that they each had an adult mentor in their lives who loved and cherished them.
Liam had people who adored him, most especially Linda (Jim's wife), but she couldn't come with him and hold his hand and guide him through the difficult transition from TX where everyone in the ward knew and loved him to this new place with a big new ward and no one who really knew and understood him. Liam was the one who weighed most heavily on my heart when it came to really needing "his person" and not really having one here. While he does have his Kassidi, he still needed something a little more. I worried that that person wouldn't come or that they'd come too late.
His first few weeks of nursery at church were awful. He had a sweet and dedicated teacher, but she was extremely pregnant and the classroom was simply too small for the number of children in there. When Liam came in, he was all over the place. He was like a little tornado on two feet. There was nothing even remotely successful about those first weeks in nursery and I would come home and just cry every Sunday after church. I dreaded going. I knew we needed to be there, but I hated knowing that he was "that one kid" that every teacher dreads having show up. His teacher never showed any dislike for him and never said one unkind thing, but I know he was more than a little challenging for her.
About five weeks after moving here, the nursery was split and Liam was moved to the younger nursery along with about six other kids. His class had been cut more than in half AND they had their own space. That alone was a huge blessing. Still, there was something more profound that happened that week. Sister Meier was called to be one of his two nursery leaders.
I remember vividly my first impression of Debra. She seemed so poised and put together. And she smiled a lot. Really, a lot, but not the cheesy kind of smile that hurts your face at the end of the day. She has the kind of smile that shows a sort of contentment with life and a genuine joy in being where she happens to be in that moment. If you've ever seen that kind of smile, you know what I'm talking about. I had spoken a little bit with her in weeks previous to her being called to Liam's nursery because she was a substitute one Sunday. I'd been asked to be in there whenever he was there so that he could only terrorize half the children rather than all of them. She shared a little about her life and her family. She talked about how she loved being with the little ones since her youngest was twelve now. She'd home schooled all of her children and really loved being with them. I remember taking a huge sigh of relief when her name was read off as his new teacher because I knew she'd at least be able to tolerate him and maybe even enjoy him a little.
When I dropped him off in the new nursery that first Sunday, I went to climb over the gate so that I could stay with him like I'd been asked all the previous weeks. She stopped me and said she could handle it and would let me know if she needed me. I sat through all of Sunday School and Relief Society jerking my head to look toward the door every time it opened fully expecting her to bring him to me and ask him not to come back unless it was in hand cuffs. She never came. I went to pick him up and she smiled and said something to the affect of "Well, he sure is active and eager to experience what's going on around him. We have some work to do, but I think he's going to do great." That was the first Sunday in many that I didn't come home and bury my head in my pillow and just cry.
It's been a few months now, and Liam is thriving with her. She smiles every single Sunday and greets him happily. She's "learned him". She has mastered the art of predicting what he's going to do and being one step ahead of him at all times. She knows he's going to rifle through anything at his level, so she makes sure the only toys and papers at his level are safe for Liam to play with. She puts the trash can up high where he can't reach it. She figured out that he eats all the crayons laying idol on the table, so each kid gets one crayon only making it much more challenging for him to get to eat one. She and Sister Lidell (the other teacher, who is equally as wonderful) have even taught him how to use a crayon to scribble. He's so proud of this accomplishment! She recognized that he wants to eat but has some oral sensory issues, so she keeps bananas and cold cuts (his two favorite treats of all time) on hand for him.
With her help and tremendous patience, Liam is even sitting a little bit during lesson time. She asked about his hearing aids, so I taught her how to use them. He gets to hear in class now!! Granted, it's short lived most of the time, but it's a start.
We happened to be at another friend's birthday celebration at a restaurant and Sister Meier got the luck of sitting next to Liam at the table. Anyone who has ever had the honor of dining with him knows this kid will have lots of first dates, but second dates will come once in a blue moon unless he improves his table manners. I could be wrong, but it seemed that she genuinely enjoyed his company. They had a bond. He is eager to please her and get her attention. She knew and noted things about him and his personality that I thought I only had noticed. She laughed at the funny things he did rather than being frustrated with it all.
As much as she has done for Liam, she has also done so much for me. There is no greater comfort than knowing your child isn't just being tolerated, but that he's being loved. I know she must go home exhausted every single Sunday. I know she must crave grown-up conversation. Instead, she gets Liam. In exchange for her sacrifice each week, I get the little break I need. I get to enjoy some much needed spiritual feeding while at the same time feeling pride in the fact that I know someone else can see that my child is lovable. I don't have to feel ashamed by how wildly active he is, or by the fact that he doesn't pay much attention to the lesson, or that he prefers to eat the play-doh rather than sculpt with it. I know she is delighting in his little accomplishments as much as I am, and I am so grateful for that.
So, Liam has found his person at least for now. And me? I have found peace of mind and joy in worshiping at Sunday services. Thank you, Sister Meier. You will never truly know what a blessing you have been to our family.
Labels:
good friends,
LDS church,
LDS nursery,
Liam,
teachers
Saturday, January 1, 2011
We Have a Plan!
Liam has been doing really well in school. I'm so delighted with the progress he's made in terms of learning to sit down and focus on what he's being asked to do and even with learning to play with toys the right way rather than simply throwing them. Even with that progress, though, it sort of felt like Liam had hit a plateau. He had one or two words and wasn't at all consistent with them. And then there's wearing his hearing aids. I'm pretty sure he'd rather be strung upside down in a closet by his pinky toes rather than wear his hearing aids like he's supposed to. It's a constant battle. His cap that Kadee made has helped a lot, but he's a smart kid and he's learning to get past it. Little stinker.
I sat down and visited with the school's director who has been working with Liam and keeping detailed notes on his progress. She and I both agreed that it's time to increase his time spent at school, so we're adding a third day of school for him. I think that's going to make a big difference. Even more importantly, she came to work with him here at home during the holiday break. While she was here, I was able to really learn what it is she needs us to be doing wit him. We finally have a plan and it's working!!!
We have a special "Kassidi box" that is full of specific toys that are only to be used while Liam is working on his language and wearing his hearing aids. We will take him to the front room of the house, which has its own door to help quiet things and only one piece of furniture (see? It pays to have no furniture!). When he's in there, he will be required to wear his hearing aids the whole time and to use the toys in a very controlled way. We have vocabulary we expect him to wait for before using the toys, and hopefully he'll even repeat the language we give him. Right now, we're focusing heavily on requiring him to look directly at us before we speak and allow him to use the toy. As we make more progress, I'll be sure to video tape little bits of what we're doing to demonstrate how we're doing this all.
The exciting news is that, just in the time we've worked over Christmas break, he's really getting it. He has repeated one word (bang bang bang), and has come to understand that he needs to look to us for direction. I'm really excited to see what kind of progress he starts to make now that he's being pushed at school, spending more time at school, and being pushed at home.
I sat down and visited with the school's director who has been working with Liam and keeping detailed notes on his progress. She and I both agreed that it's time to increase his time spent at school, so we're adding a third day of school for him. I think that's going to make a big difference. Even more importantly, she came to work with him here at home during the holiday break. While she was here, I was able to really learn what it is she needs us to be doing wit him. We finally have a plan and it's working!!!
We have a special "Kassidi box" that is full of specific toys that are only to be used while Liam is working on his language and wearing his hearing aids. We will take him to the front room of the house, which has its own door to help quiet things and only one piece of furniture (see? It pays to have no furniture!). When he's in there, he will be required to wear his hearing aids the whole time and to use the toys in a very controlled way. We have vocabulary we expect him to wait for before using the toys, and hopefully he'll even repeat the language we give him. Right now, we're focusing heavily on requiring him to look directly at us before we speak and allow him to use the toy. As we make more progress, I'll be sure to video tape little bits of what we're doing to demonstrate how we're doing this all.
The exciting news is that, just in the time we've worked over Christmas break, he's really getting it. He has repeated one word (bang bang bang), and has come to understand that he needs to look to us for direction. I'm really excited to see what kind of progress he starts to make now that he's being pushed at school, spending more time at school, and being pushed at home.
Labels:
deaf ed.,
language acquisition,
Liam,
Moog School for the Deaf,
teaching
Subscribe to:
Posts (Atom)