Our Shearing for Hearing event is done and I think it's safe to call it wildly successful. We raised just over $2,000 with our paypal account that is attached to the Donate button here on my blog. (Feel free to click on it and donate if you still want to.) Then, on Saturday we raised $7,085. Considering that I came up with this idea just three and a half weeks ago, this is a huge number. It's almost overwhelming to think of how far we came in such a short time. We had a bounce house, raffle, silent auction, clowns, chair massages, drinks and snacks, face painting, and so much FUN (oh, and a LOT of haircuts!). Pictures are soon to come. My goal was $10,000. If we put the paypal and cut-a-thon totals together, we're just about there.
Those are just numbers, but let me break down for you other things I witnessed as I prepared for and carried out this event. First, people are good. In fact, they are supremely good. And caring. And, oh so generous. I saw shop keepers reach into their own pockets and donate to Raelyn's cause. I watched a principal and two fifth grade teachers sit in a splash booth and get repeatedly soaked with ice cold water to raise money. I watched people walk in for $10 haircuts and leave $90 tips. I saw businesses sending us their best staff to provide haircuts (thank you, Great Clips), drinks (thank you, Red Robin), and chair massages (thank you, Dr. Carpenter), all of which brought in tips that were all given to Raelyn. I saw well educated, highly skilled individuals willing to do jobs like sweeping hair, emptying trash cans, and selling raffle tickets all in the name of helping a little girl some of them couldn't even pick out of the crowd. I saw children freely spending their hard-earned chore money because they knew "some little girl needs to hear". I saw miracles.
When this first started, Raelyn's family needed $90,000 to implant one ear. They considered mortgaging their home for it. Then, they got one surgeon to waive his fee and get a discounted implant. The hospital still wanted $72,000 plus $1,200 for anesthesia. Then, just this past week, they found a surgeon associated with a foundation who felt he could get it as low as $30,000. With our fund raiser, we were one-third of the way there.
I've always been taught (and had firm faith in) the fact that if we present our best, the Lord provides the rest. In other words, if we do everything we can to help ourselves, the Lord will find a way to make sure our needs are met. I knew that we'd find a way to get the rest of the money for Raelyn to be implanted. This morning, Raelyn's mom got a call from the surgeon affiliated with the foundation. He got the cost down to $15,000!!!! That means they are only short $6,000 and are taking out a loan for it. We will do other small fund raisers to help them pay off that cost quickly. Raelyn will be implanted on the 21st of September. This, my friends, is what I like to refer to as one of God's miracles. And that's really all there is to say about that.
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.
Monday, August 13, 2012
Thursday, August 2, 2012
Shearing For Hearing-The Updates
We are making tremendous progress toward our Shearing for Hearing event here in our area. I'm beyond humbled when I go out into the community looking for donations for the auction and raffle, and see the tremendous amount of generosity in people's hearts. It's almost overwhelming when you realize just how much good there really is out there. Sometimes I wish there was a news channel that only spread good news because it feels like the joy and good in the world is often buried in the media by the sad, angry, and scary stuff. The good is there, folks. You don't even have to look far to find it.
We still need some more items to make a silent auction happen, but I think we'll get there. We also need some more tables and chairs, but those will come too. Then, most of all, we need people to come for haircuts, dunking booths, auctions, and raffles. If I'm lucky, they'll be feeling generous when they come and the overwhelming feeling of joy that comes with doing something good for someone else come will come over them...and they'll act on it.
Our event in Dallas looks to be on hold or cancelled for now. The timing just isn't right and things aren't coming together. That's okay. Everything happens for a reason and we take the not so great with the really great. If there are any changes or progress in that area, I'll be sure to blog about it. Until then, we focus on the event we're doing here and are grateful for this opportunity to do something for someone else just because we can.
One thing that's been really interesting is seeing how my children have been as I've worked day and night on this project. Their behavior has been SPECTACULAR! They've helped around the house, walked miles and miles in the heat helping me pass out fliers door to door in the area, talked the event up to their friends, and made big plans to help me on the day it all comes together. In a lot of ways, I feel like I'm being more blessed by doing this than even Raelyn's family, but in different ways.
Even Stinky Liam is helpful. He loves looking at the fliers and telling us all about Raelyn, who's picture is on it. He loves her and it's so sweet hearing him talk to her picture with so much excitement in his voice. Liam is also making a bit of progress toward his own implant. Because of the complications last time, our team seems to feel that it's best if we take him to a specialist in New York City for the second one. This doctor has tools and expertise that we can't find anywhere else. The extra expense and unknowns that come with taking him somewhere else make me very nervous, but we will of course do what's best for him at the end of the day. Right now, it's just discussion and preliminary testing. As things move forward, I'll blog more on that.
In really exciting news, Miss Mindy had her follow-up hearing screen yesterday. SHE HAS PERFECT HEARING!!!!! We were pretty sure her hearing was fine, but having the audiologist do the test and confirm it was like taking me to Disneyland and telling me the Magic Kingdom was all mine. While she would have looked stinking cute in purple hearing aids with hot pink earmolds, I'm thrilled that she will instead just wear little purple dresses with hot pink hair bows. It's a pretty great trade, in my opinion.
So, that's the updates. They're all happy and exciting. I've had a few people want more information on our Shearing for Hearing event. Because I don't like to publish where I am, I have opted not to post the flier. If you do want more information, you can e-mail me or post a comment and we'll figure something out. As always, I'd love it if everyone would spread the word and share my link so others can hit that donate button up there or just get more informed about the issues involved with hearing loss in young children.
We still need some more items to make a silent auction happen, but I think we'll get there. We also need some more tables and chairs, but those will come too. Then, most of all, we need people to come for haircuts, dunking booths, auctions, and raffles. If I'm lucky, they'll be feeling generous when they come and the overwhelming feeling of joy that comes with doing something good for someone else come will come over them...and they'll act on it.
Our event in Dallas looks to be on hold or cancelled for now. The timing just isn't right and things aren't coming together. That's okay. Everything happens for a reason and we take the not so great with the really great. If there are any changes or progress in that area, I'll be sure to blog about it. Until then, we focus on the event we're doing here and are grateful for this opportunity to do something for someone else just because we can.
One thing that's been really interesting is seeing how my children have been as I've worked day and night on this project. Their behavior has been SPECTACULAR! They've helped around the house, walked miles and miles in the heat helping me pass out fliers door to door in the area, talked the event up to their friends, and made big plans to help me on the day it all comes together. In a lot of ways, I feel like I'm being more blessed by doing this than even Raelyn's family, but in different ways.
Even Stinky Liam is helpful. He loves looking at the fliers and telling us all about Raelyn, who's picture is on it. He loves her and it's so sweet hearing him talk to her picture with so much excitement in his voice. Liam is also making a bit of progress toward his own implant. Because of the complications last time, our team seems to feel that it's best if we take him to a specialist in New York City for the second one. This doctor has tools and expertise that we can't find anywhere else. The extra expense and unknowns that come with taking him somewhere else make me very nervous, but we will of course do what's best for him at the end of the day. Right now, it's just discussion and preliminary testing. As things move forward, I'll blog more on that.
In really exciting news, Miss Mindy had her follow-up hearing screen yesterday. SHE HAS PERFECT HEARING!!!!! We were pretty sure her hearing was fine, but having the audiologist do the test and confirm it was like taking me to Disneyland and telling me the Magic Kingdom was all mine. While she would have looked stinking cute in purple hearing aids with hot pink earmolds, I'm thrilled that she will instead just wear little purple dresses with hot pink hair bows. It's a pretty great trade, in my opinion.
So, that's the updates. They're all happy and exciting. I've had a few people want more information on our Shearing for Hearing event. Because I don't like to publish where I am, I have opted not to post the flier. If you do want more information, you can e-mail me or post a comment and we'll figure something out. As always, I'd love it if everyone would spread the word and share my link so others can hit that donate button up there or just get more informed about the issues involved with hearing loss in young children.
Wednesday, July 18, 2012
Shearing For Hearing-It's Really Happening!!!
We are making leaps and bounds progress in getting Raelyn's cochlear implant. Let me share some of the amazing things, we currently have:
1. A Sponsor!!! A local orthodontist has generously agreed to sponsor us so we can have better odds of finding a venue...which we need FAST!
2. A dunking booth! This will be so much fun!
3. A printing company to make fliers.
4. A clown...and the clown has some other fun friends.
5. A face painter.
6. Some stylists. (Not enough yet. We still need MORE!)
7. An offer to have another Shearing for Hearing put together back in Dallas by some amazing friends of mine!!!! (Double the odds of success!!!!)
8. The surgeon involved has agreed to waive his fees so that only the hospital fees will need to be paid.
9. The support of the Olive Osmond Perpetual Hearing Fund. This is HUGE because it helps us to be able to accept donations from people needing it to be a tax deduction.
9. Hope. We have lots and lots of hope. This is what matters most.
Now we need to start getting the donations coming in. As you may have noticed, there is now a "Donation" button in the upper right hand corner of my blog. You can now click it to make donations to help us help Raelyn. Can't make a donation? We'd love it if you'd provide a link to our blog with Raelyn's story on your own blog or Facebook/Twitter page. You can find her story right here. Talk it up, folks! We need your help.
With everyone helping us in one way or another, we can make it so that Raelyn is implanted and activated just in time to truly Hear the Bells on Christmas Day!!!
1. A Sponsor!!! A local orthodontist has generously agreed to sponsor us so we can have better odds of finding a venue...which we need FAST!
2. A dunking booth! This will be so much fun!
3. A printing company to make fliers.
4. A clown...and the clown has some other fun friends.
5. A face painter.
6. Some stylists. (Not enough yet. We still need MORE!)
7. An offer to have another Shearing for Hearing put together back in Dallas by some amazing friends of mine!!!! (Double the odds of success!!!!)
8. The surgeon involved has agreed to waive his fees so that only the hospital fees will need to be paid.
9. The support of the Olive Osmond Perpetual Hearing Fund. This is HUGE because it helps us to be able to accept donations from people needing it to be a tax deduction.
9. Hope. We have lots and lots of hope. This is what matters most.
Now we need to start getting the donations coming in. As you may have noticed, there is now a "Donation" button in the upper right hand corner of my blog. You can now click it to make donations to help us help Raelyn. Can't make a donation? We'd love it if you'd provide a link to our blog with Raelyn's story on your own blog or Facebook/Twitter page. You can find her story right here. Talk it up, folks! We need your help.
With everyone helping us in one way or another, we can make it so that Raelyn is implanted and activated just in time to truly Hear the Bells on Christmas Day!!!
Friday, July 13, 2012
My Big Brainstorm - "Shearing for Hearing"
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| This is Raelyn. Can you help me help her hear? |
Every now and then I get a brilliant idea. I'll be honest. It doesn't happen all that often, so it's worth paying close attention when it does happen. This morning was one of those moments when my light bulb came on and I got an idea so brilliant that I haven't been able to sit still since. I'm bound and determined to make this come to fruition.
Liam has a little girl in his class that is kind of his bestie. She's a tiny little thing full of spunk and spirit. She tells him where to go and how to get there and he actually listens. They love to play and giggle together. They find ways to keep their teacher on her toes all the time. My favorite is watching them hug each other every time they get together. For as little as they are, they have a sweet friendship like no other. This little girl is truly a treasure to Liam and I, for one, think she is about the CUTEST thing on two feet.
His little friend has always worn hearing aids. Her mom is a pro at making sure her cute little purple aids always have color coordinated ear molds that are about as girly as possible. Shortly before school let out last spring, the unthinkable happened. She lost more hearing. A lot more hearing. Having been there and done that, I know how heartbreaking that is for a parent to watch and it was no different for her family than it was for mine. The only resource left for her is a cochlear implant. This seems nice and easy and her sweet parents finally made the difficult decision to implant her and then the worst case scenario happened: their insurance doesn't cover implants because they're "cosmetic".
This is where my brilliant idea comes in. This situation has been weighing on my mind for a while because I know what it's like to want desperately to give your child something she NEEDS, but you can't because money stands in the way. I was in the shower this morning when the answer finally came to me. Her mom is a hair dresser, and a very good one at that. In my mind, I can see this amazing event that I'm going to call "Shearing for Hearing". She is going to get as many of her hair dressing friends as she can, and I'm going to work on getting some more on top of that. I'm talking I want an ARMY of hair stylists to be on hand for the loooooong line of hairy people needing to be cleaned up.
My plan is to offer haircuts for $10 donations per head. Of course, customers can donate more (far more) if they'd like. I'm looking at an outside venue like possibly the parking lot of our HOA clubhouse. (We're waiting on the trustees to approve it and then we can move forward.) We'll only offer cuts and no styling or coloring this time. While people wait, we'll have a clown that does balloon animals, hopefully a bounce house (I'm looking for someone to donate one or tell me how to find a fairly cheap rental), and a dunking booth. Since our clubhouse is full of residents who have children who all go to the same school, my plan is to beg and plead with the school principal, music teacher, maybe even the school nurses, and the two most popular 5th grade teachers ever to come sit in the booth. Who doesn't want to soak their favorite educators, right?
The timing couldn't be better. School starts here the 15th of August, so August 11th is the Saturday we're looking at. I know I like my kids to look good just before school starts and $10 each is a great bargain. What could be better?!?!?
I want to go a step further with this. I want to create The Baby Ears Foundation and raise funds to give to other families like this one who just need some help to get their kids the hearing they so deserve. Batteries, warranty renewals, repairs, hearing tests, etc. all add up and are often not covered by insurance. If I have my way, no child will ever go without hearing due to their parents being unable to afford it. It's a long term goal, but I WILL see it through. Mark my words.
In the meantime, I need to get my wheels turning for this first event. I need help.
1. Who knows about donations and tax laws? Do I need to do something special? Can the hair dressers collect the fees and then just gift it to the family or do I have to get some sort of permission? HELP!!
2. A bounce house. I REALLY need one cheap. Anyone know where to start on that one?
3. I need MORE MORE MORE stylists. Badly. Please? It's a great cause.
4. Ideas and things I should know. Do I take only cash so there are no bounced checks or do I just take the risk? What do I need to know?
Okay, readers. I know you're all out there. Help me help someone else.
Labels:
cochlear implant,
Deaf,
friends,
fund raisers,
Liam
Wednesday, July 11, 2012
The Climax Theater
One of my favorite things about CJ is his excitement and zest for life. One of my other favorite things about him is the funny way he hears things and is just sure he heard it precisely right. We had a funny over the weekend that I am still laughing about.
CJ's best buddy from TX and his wife came to see us over the weekend and we took the kids to the science center. There is an IMAX theater there, but CJ always hears it as climax for some reason. He was so excited to tell Jim all about it so Jim would want to go. He explained it with great enthusiasm as he exclaimed, "We have to go to the climax theater! It's huge and it's on every side and it feels like it's all around you!!!". Having the gutter brain that we have, the rest of us in the van could not stop laughing all weekend long.
He also had a follow up to his Canadian/Comedian comment from several months ago. You may remember that he said he wanted to be a Canadian because he's funny and he likes to make people laugh. I replied, "You mean a comedian?"
"Yeah, that's what I said. Canadian."
Anyway, he was reading a book of facts out loud and said to me, "All residents of the country of Canada are called Canadians." Thinking that he finally knew the difference, I nodded and told him that was correct. He shrugged and said, "Hun, they must all be funny there." I give up.
CJ's best buddy from TX and his wife came to see us over the weekend and we took the kids to the science center. There is an IMAX theater there, but CJ always hears it as climax for some reason. He was so excited to tell Jim all about it so Jim would want to go. He explained it with great enthusiasm as he exclaimed, "We have to go to the climax theater! It's huge and it's on every side and it feels like it's all around you!!!". Having the gutter brain that we have, the rest of us in the van could not stop laughing all weekend long.
He also had a follow up to his Canadian/Comedian comment from several months ago. You may remember that he said he wanted to be a Canadian because he's funny and he likes to make people laugh. I replied, "You mean a comedian?"
"Yeah, that's what I said. Canadian."
Anyway, he was reading a book of facts out loud and said to me, "All residents of the country of Canada are called Canadians." Thinking that he finally knew the difference, I nodded and told him that was correct. He shrugged and said, "Hun, they must all be funny there." I give up.
All Hail Liam, the Dictator!
Well, ever since Liam has been on his medicine, we've noticed something very unexpected: an explosion of language. It's a nice surprise, but it also highlights the fact that this little dude is a bit bossy. Actually, he's freakishly bossy. Little booger.
Example Number One: I tried a new recipe I found on Pinterest. It's the one with garlic and brown sugar chicken. It was a complete fail and none of the kids would touch it. I think most of them went and snuck some cereal when I wasn't looking later on. Anyway, I had Liam's plate all set and ready to go for him. His food was lovingly placed to look pretty and his chicken was cut into tiny pieces and it just looked nice. We called him to the table and he promptly came and even seemed a little excited to eat. When he got to his plate, he stopped dead in his tracks. He looked it up and down and then wrinkled his nose in disgust before saying, "I need trash. NOW!" Then, he picked up his plate and walked over to the trash where he promptly disposed of the offending meal like it was no big deal before walking away. The rest of us, of course, sat there looking like idiots and did nothing to stop him. We were too in shock at what had just transpired I think.
Example Number Two: It was Rachel's turn to bless the food for dinner. Everyone folded their arms and respectfully bowed their heads while she said her little prayer. After her prayer, we all said Amen and began eating. Liam took offense to this and let us know it with a whole lot of angry arm waving and "No! LIAM TURN!". He went around to each and every one of us and made us fold our arms and then proceeded to "pray". He went on in complete jibberish for a good fifteen seconds before saying a loud and clear "Amen!". Then he raised his hands to us and said, "Okay, now eat" as if he was granting us permission. See what I mean? Bossy!
Example Number Three: (This one is actually not so bossy, and kind of a breakthrough). At church, we sit with a couple of families that we know and trust who don't mind that our kids wiggle. They're actually very helpful. One of the families has a daughter named Ellie who is one of our favorite baby sitters. Liam loves her. On Sunday this week, he was being a little loud so Byron brought him to me in the lobby. Mindy was crying, so I was already out there. He wasn't being naughty, just loud so he sat with me pretty well for a couple of minutes. Then he got wiggly and became adamant that he wanted to go back in the chapel. I asked him to tell me what he wanted. He slowed down a little, looked at me, and said "I want sit Ellie chair now please". I wanted to be sure I knew what he wanted so I asked him, "You want to sit with Ellie in a chair?" His replied, "Yes!". I asked where and he pointed to the door and said, "In dare". He used a complete sentence to correctly tell me what he wanted and where it was!!!!! THIS IS HUGE!!! I, of course, promptly went to the door and beckoned for Ellie to come take his hand and off they went to sit together for the rest of the meeting.
He's even gotten bossy with the dog. He is constantly telling her to go sit or go into her cage or go lay down. He's very authoritative with her. The dog has this ridiculous squeaky rubber chicken that she can't live without. She would be in heaven if we'd just throw the thing for her all day long so she could fetch it and bring it back to us. It's her FAVORITE toy and nothing else compares. (Trust me. We've tried other toys.) Anyway, Liam got tired of throwing the chicken but the dog wouldn't let up, so he finally took it and locked it in her cage before walking away. That foolish dog stood there barking her head off until I unlocked the cage for her to go in and get it. She took it back and started begging Liam to throw it again and he decided it was time to take drastic measures. He took that chicken and shoved it into the arm rest compartment of our sectional couch and walked away. Again, the dog stood there a little bewildered and barking at the couch. Anyone walking in would have thought the house was haunted and the dog was barking at a ghost.
So, there you have it. Liam's behavior is improving, but he's turning into quite the little bossy pants.
Example Number One: I tried a new recipe I found on Pinterest. It's the one with garlic and brown sugar chicken. It was a complete fail and none of the kids would touch it. I think most of them went and snuck some cereal when I wasn't looking later on. Anyway, I had Liam's plate all set and ready to go for him. His food was lovingly placed to look pretty and his chicken was cut into tiny pieces and it just looked nice. We called him to the table and he promptly came and even seemed a little excited to eat. When he got to his plate, he stopped dead in his tracks. He looked it up and down and then wrinkled his nose in disgust before saying, "I need trash. NOW!" Then, he picked up his plate and walked over to the trash where he promptly disposed of the offending meal like it was no big deal before walking away. The rest of us, of course, sat there looking like idiots and did nothing to stop him. We were too in shock at what had just transpired I think.
Example Number Two: It was Rachel's turn to bless the food for dinner. Everyone folded their arms and respectfully bowed their heads while she said her little prayer. After her prayer, we all said Amen and began eating. Liam took offense to this and let us know it with a whole lot of angry arm waving and "No! LIAM TURN!". He went around to each and every one of us and made us fold our arms and then proceeded to "pray". He went on in complete jibberish for a good fifteen seconds before saying a loud and clear "Amen!". Then he raised his hands to us and said, "Okay, now eat" as if he was granting us permission. See what I mean? Bossy!
Example Number Three: (This one is actually not so bossy, and kind of a breakthrough). At church, we sit with a couple of families that we know and trust who don't mind that our kids wiggle. They're actually very helpful. One of the families has a daughter named Ellie who is one of our favorite baby sitters. Liam loves her. On Sunday this week, he was being a little loud so Byron brought him to me in the lobby. Mindy was crying, so I was already out there. He wasn't being naughty, just loud so he sat with me pretty well for a couple of minutes. Then he got wiggly and became adamant that he wanted to go back in the chapel. I asked him to tell me what he wanted. He slowed down a little, looked at me, and said "I want sit Ellie chair now please". I wanted to be sure I knew what he wanted so I asked him, "You want to sit with Ellie in a chair?" His replied, "Yes!". I asked where and he pointed to the door and said, "In dare". He used a complete sentence to correctly tell me what he wanted and where it was!!!!! THIS IS HUGE!!! I, of course, promptly went to the door and beckoned for Ellie to come take his hand and off they went to sit together for the rest of the meeting.
He's even gotten bossy with the dog. He is constantly telling her to go sit or go into her cage or go lay down. He's very authoritative with her. The dog has this ridiculous squeaky rubber chicken that she can't live without. She would be in heaven if we'd just throw the thing for her all day long so she could fetch it and bring it back to us. It's her FAVORITE toy and nothing else compares. (Trust me. We've tried other toys.) Anyway, Liam got tired of throwing the chicken but the dog wouldn't let up, so he finally took it and locked it in her cage before walking away. That foolish dog stood there barking her head off until I unlocked the cage for her to go in and get it. She took it back and started begging Liam to throw it again and he decided it was time to take drastic measures. He took that chicken and shoved it into the arm rest compartment of our sectional couch and walked away. Again, the dog stood there a little bewildered and barking at the couch. Anyone walking in would have thought the house was haunted and the dog was barking at a ghost.
So, there you have it. Liam's behavior is improving, but he's turning into quite the little bossy pants.
Labels:
ADHD,
Deaf,
language acquisition,
Liam,
medication
Tuesday, July 3, 2012
Well, We Tried it And...
I posted last week about a really hard choice I had to make on Liam's behalf. The discussion surrounded the fact that Liam was really having a hard time controlling his impulses and, as a result, was sometimes putting himself and even others into danger. Our pediatrician has been encouraging us to consider some ADHD medicine to help him with these impulses and I'd been resisting it. Finally, I had decided to give in a little bit and consider trying it especially after having Byron's encouragement and hearing that his school was also on the same page.
With all that in mind, I went ahead and gave him his first dose on Thursday morning. So far, this is what has happened:
1. Liam has pooped in the potty by his own choice. Repeatedly.
2. Liam came grocery shopping with me and was delightful. We talked and giggled and he followed my instructions to put things in the buggy.
3. Liam had a potty accident and came to my door to tell me about it rather than painting with it, which would be his usual choice.
4. At church, Liam sat so nicely that a visitor sitting by him leaned over and told us that he is a "Model kid and so well-behaved." Yeah, we got a good giggle at that one.
There are some down sides. When the medicine wears off, he is like a total wild man (or maybe he's just himself and we never noticed how bad things really were?). His appetite is somewhat suppressed. I still worry about the long-term affects of giving this kind of medicine to a child three years younger than it's intended for.
So, there is our update. These are just baby steps and I'm sure we've still got a mountain to tackle, but I think things are looking up. Dare I say they're looking hopeful even?
With all that in mind, I went ahead and gave him his first dose on Thursday morning. So far, this is what has happened:
1. Liam has pooped in the potty by his own choice. Repeatedly.
2. Liam came grocery shopping with me and was delightful. We talked and giggled and he followed my instructions to put things in the buggy.
3. Liam had a potty accident and came to my door to tell me about it rather than painting with it, which would be his usual choice.
4. At church, Liam sat so nicely that a visitor sitting by him leaned over and told us that he is a "Model kid and so well-behaved." Yeah, we got a good giggle at that one.
There are some down sides. When the medicine wears off, he is like a total wild man (or maybe he's just himself and we never noticed how bad things really were?). His appetite is somewhat suppressed. I still worry about the long-term affects of giving this kind of medicine to a child three years younger than it's intended for.
So, there is our update. These are just baby steps and I'm sure we've still got a mountain to tackle, but I think things are looking up. Dare I say they're looking hopeful even?
Sunday, June 24, 2012
Sometimes We Have To Make Hard Parenting Choices
You know those days when you wake up and you just know exactly what you need to do about something that has been weighing on your mind and you really don't like the answer? I had one of those days this week. I kept hoping I'd wake up one morning and the answer would be different, but instead it has just become clearer and clearer.
Anyone who has read any posts about Liam and his antics in the past couple of years knows that he is one rascally kid...and that's putting it lightly. This kid is in constant motion from the minute his eyes open in the morning until he finally collapses asleep at night. He is truly a two foot tornado destroying everything in his path and often putting himself in danger in the process.
We have a great pediatrician, and as much as I trust her opinion, I've avoided her suggestion that we consider giving him some medicine to help control his impulses for a long time. In my heart, I wanted to believe that giving him more language, more attention, more structure, more of...well, something that he would eventually mellow out. The thought of medicating him so young just felt wrong.
Well, we've given him sound and language and he's still all over the place. We've given him structure and he's still all over the place. We've given him attention and he's still all over the place. Are you seeing a trend here?
It's not so much that we mind him being all over the place. The bigger issue is that of safety. In the past few weeks alone,he has:
Anyone who has read any posts about Liam and his antics in the past couple of years knows that he is one rascally kid...and that's putting it lightly. This kid is in constant motion from the minute his eyes open in the morning until he finally collapses asleep at night. He is truly a two foot tornado destroying everything in his path and often putting himself in danger in the process.
We have a great pediatrician, and as much as I trust her opinion, I've avoided her suggestion that we consider giving him some medicine to help control his impulses for a long time. In my heart, I wanted to believe that giving him more language, more attention, more structure, more of...well, something that he would eventually mellow out. The thought of medicating him so young just felt wrong.
Well, we've given him sound and language and he's still all over the place. We've given him structure and he's still all over the place. We've given him attention and he's still all over the place. Are you seeing a trend here?
It's not so much that we mind him being all over the place. The bigger issue is that of safety. In the past few weeks alone,he has:
Learned to climb through and over the gate in the backyard to get onto the busy road behind us
Learned to balance on his window sill and rock back and forth running risk of falling through the window and down three stories onto concrete (all upstairs windows now have bars)
Mastered going out of the house through the garage
Escaped the house repeatedly and once gone into strangers' homes, one with a gun and a big scary dog (the owner is a cop)
Tried to "help" us with Mindy by picking her up and then putting her down quickly (luckily on the couch and no harm was done)
Constantly trying to eat his hearing aid batteries/processor/anything a goat would eat
Darted in front of a car in a parking lot when Byron let go of his hand for a split second to open the car door
Has managed to get to the sharp knives no matter how high we lock them
Constantly climbed on top of books or pots on top of counters to get things too high up for his reach
Unbuckles his carseat while driving. We've gotten a new more expensive "stronger" buckle seat and it still took only days to figure that one out, too.
The bottom line is that he's a danger to himself and sometimes to others as well. So, what do we do? Well, the pediatrician has some ideas. I got a chance to sit and really talk to her the other day while I was taking Mindy for a visit. She had some valid points that I hadn't considered before. She pointed out that others in the family don't always enjoy him, but instead dread him. No child should be dreaded. She pointed out how it must feel to be him and feel the constant need to always be moving, touching, , running, etc. She mentioned CJ and how much better CJ seems to feel now that we've given him medicine. I waited eight years to allow CJ to have it, and that was hard for me, but the truth is that he is a much happier kid with it than without it. She asked me why I'd want to make Liam wait to feel better when we could just do it now. She had a point.
I e-mailed Liam's teachers and team at school and laid it all out for them. They spend as much time with him as I do, if not more and their opinion matters to me. Betsy, the director of his school, responded and shared how she feels about medications in general. Like me, she avoids medicines as much as possible. She conceded that two of her four children needed medicines and now that they're adults, they can express to her how much better they feel with them than without them. At the end of the day, it comes down to the fact that she agrees it's time to try something new.
So, here I sit as his mom wanting to do anything but medicate him but knowing exactly what I need to do. It's time to try the medicines and see if we can help him with his impulse control and make him more teachable and safe. He's such a smart, happy, beautiful kid and I want for him to feel loved and included and in control of himself. For as much as I hate the idea, I have a feeling it just might work.
In the back of my mind, I worry that people will look at us and think we're those parents who opted to drug our kid rather than parent him. We know the truth. We've worked and tried everything under the sun. The opinions of others shouldn't matter, but they somehow sort of do. Weird, right? Or maybe I worry that others will view this as me accepting failure on my part to teach him right. Maybe it is a failure, but maybe it's just something Liam has to overcome and we're giving him the tools to help do that. I don't really know the answers to that one.
What I do know is that I'll be talking to the doctor tomorrow and setting up a plan that includes picking up a new prescription for a medicine to help him help himself better. I know it's the right thing to do and I know I don't like it. Most of all, I know that I love him more than words can say.
Thursday, June 21, 2012
The Hard Stuff
CJ has beaten the odds. On so many levels, he's a success story that will be told for years to come. He's such an odds beater (is that even a word?) that his case has been used as a model for early intervention providers back in TX. On all the measurable levels, CJ's story has had the ending that every provider could ever ask for. Great speech, perfect really. Amazing literacy skills. Brilliant mind and ability to articulate what's in his goofy little head. Smart. So very smart. He's kept up with all of his mainstream peers and then some. All of these are great things and we are so proud to know that he's done so well despite the challenges placed before him literally since birth.
I have to be honest, though. There are some things that can't really be measured by a standardized test that he has struggled with. One thing in particular weighs heavily on our minds as his parents and we worry for him. Maybe it's not so much worry as it is that we just wish we could make it easier for him and take the frustration away from him. Friendshipping. It's so difficult for CJ to make and keep friends and it's like a knife to our hearts every time we see him hurting.
CJ is a GREAT kid and he would give anything for a good friend who wanted to spend time with him. Pragmatics is hard for him, though, so he doesn't always "get it" when other kids want to do something different, when they laugh at jokes he doesn't fully understand, or when they have little interest in the things he is interested in. He tries so hard to impress his friends with facts he's learned and memorized, usually about things like insects, items that only Ripley's Believe It or Not would appreciate, or bodily functions. The trouble is that other kids his age don't really appreciate CJ's facts. They also don't enjoy inventing wild creations out of left over "stuff". Other kids his age, especially the boys, want to run and jump and ride their bikes and have sword fights and, well, CJ doesn't like to do those things partly because his vestibular damage makes it so he really can't.
We watch CJ as he tries to step out of his comfort zone and befriend other children. He makes small talk, invites them to play with him, and makes funny little gifts to give them. Most of the time he comes back to us and explains that the other kid didn't want to play with him because they were busy with someone else, doesn't like bugs, or whatever else. Then he looks up at us and says almost without fail, "They don't really want to play with me, but I'm okay with that." He puts on a brave front, but we can see him hurting. He's lonely.
Then there are the kids who take it a step beyond politely declining his offer of friendship. These are the kids who tease him, make fun of him because he doesn't run as fast or can't ride a bike, tell him they'll be his friend if he gives them this, that, or the other. He's so eager to make friends that he will literally give the shirt off his back, the lunch from his tray, or the homework from his backpack only to have the kid tell him thank you and walk away with whatever treasure they've taken. These are the kids who play with him for a little while until someone better comes along, so they turn on a dime and laugh at him before going off to play something better with someone more fun. These are the kids that make my heart hurt.
This coming school year makes me nervous. CJ has one really good friend at school, and she won't be in his class. She looks out for him, puts him in his place when she needs to, helps include him in her circle of friends, and she sticks up for him when she sees other children picking on him. I'm not thrilled about the choice of placement for him next year, and the school knows it. We've discussed it in depth with the principal and next year's teacher. The teacher thinks she's got a great plan to help all the kids learn about acceptance and respect and blah, blah, blah, but I'm nervous. Even though we have an amazing teacher for him, the truth is that she can't protect him all the time and that scares me a little bit.
We're adding more pragmatics and social skills to his IEP plan. (Thank goodness for that! In TX, they'd have dismissed him from speech in kindergarten and he'd never have the chance to develop the language he needs to advocate for himself.) We're going to look into letting him join the art club and the computer clubs at school even though he's only a third grader and you really have to be in fourth grade. The idea is that these clubs will help him find peers with common interests. Mostly, we'll be praying. A lot.
The point of this post isn't to dishearten other parents with kids like CJ. It's to acknowledge the fact that, even though he's beaten the odds and done remarkably well, sometimes there will be hard parts to life no matter what you do. It's to beg parents to please PLEASE encourage your children to go out of their way to be patient with kids like CJ who really just need a friend. Actually, you might just find that CJ has quite a bit to give back. He's loyal, funny, full of goofy facts, so loving, smart, kind, talented, and completely accepting of everyone no matter what their faults.
I have to be honest, though. There are some things that can't really be measured by a standardized test that he has struggled with. One thing in particular weighs heavily on our minds as his parents and we worry for him. Maybe it's not so much worry as it is that we just wish we could make it easier for him and take the frustration away from him. Friendshipping. It's so difficult for CJ to make and keep friends and it's like a knife to our hearts every time we see him hurting.
CJ is a GREAT kid and he would give anything for a good friend who wanted to spend time with him. Pragmatics is hard for him, though, so he doesn't always "get it" when other kids want to do something different, when they laugh at jokes he doesn't fully understand, or when they have little interest in the things he is interested in. He tries so hard to impress his friends with facts he's learned and memorized, usually about things like insects, items that only Ripley's Believe It or Not would appreciate, or bodily functions. The trouble is that other kids his age don't really appreciate CJ's facts. They also don't enjoy inventing wild creations out of left over "stuff". Other kids his age, especially the boys, want to run and jump and ride their bikes and have sword fights and, well, CJ doesn't like to do those things partly because his vestibular damage makes it so he really can't.
We watch CJ as he tries to step out of his comfort zone and befriend other children. He makes small talk, invites them to play with him, and makes funny little gifts to give them. Most of the time he comes back to us and explains that the other kid didn't want to play with him because they were busy with someone else, doesn't like bugs, or whatever else. Then he looks up at us and says almost without fail, "They don't really want to play with me, but I'm okay with that." He puts on a brave front, but we can see him hurting. He's lonely.
Then there are the kids who take it a step beyond politely declining his offer of friendship. These are the kids who tease him, make fun of him because he doesn't run as fast or can't ride a bike, tell him they'll be his friend if he gives them this, that, or the other. He's so eager to make friends that he will literally give the shirt off his back, the lunch from his tray, or the homework from his backpack only to have the kid tell him thank you and walk away with whatever treasure they've taken. These are the kids who play with him for a little while until someone better comes along, so they turn on a dime and laugh at him before going off to play something better with someone more fun. These are the kids that make my heart hurt.
This coming school year makes me nervous. CJ has one really good friend at school, and she won't be in his class. She looks out for him, puts him in his place when she needs to, helps include him in her circle of friends, and she sticks up for him when she sees other children picking on him. I'm not thrilled about the choice of placement for him next year, and the school knows it. We've discussed it in depth with the principal and next year's teacher. The teacher thinks she's got a great plan to help all the kids learn about acceptance and respect and blah, blah, blah, but I'm nervous. Even though we have an amazing teacher for him, the truth is that she can't protect him all the time and that scares me a little bit.
We're adding more pragmatics and social skills to his IEP plan. (Thank goodness for that! In TX, they'd have dismissed him from speech in kindergarten and he'd never have the chance to develop the language he needs to advocate for himself.) We're going to look into letting him join the art club and the computer clubs at school even though he's only a third grader and you really have to be in fourth grade. The idea is that these clubs will help him find peers with common interests. Mostly, we'll be praying. A lot.
The point of this post isn't to dishearten other parents with kids like CJ. It's to acknowledge the fact that, even though he's beaten the odds and done remarkably well, sometimes there will be hard parts to life no matter what you do. It's to beg parents to please PLEASE encourage your children to go out of their way to be patient with kids like CJ who really just need a friend. Actually, you might just find that CJ has quite a bit to give back. He's loyal, funny, full of goofy facts, so loving, smart, kind, talented, and completely accepting of everyone no matter what their faults.
Labels:
bullying,
Deaf,
fitting in,
friends,
mainstreaming,
peers,
school,
social skills
Friday, June 8, 2012
Wild Man
| Who needs clothes when you're going to run away? Sneakers and a pull-up will suffice. |
| That container behind him was completely full of spaghetti two minutes before this picture was taken. |
Liam has been out of school for two weeks and I am grateful to say that summer school starts Monday. Holy cow! This kid needs his routine and structure. I'm pretty sure that the combination of no school and a new baby in the house is enough to make him crazy.
We've had to put locks on everything we can think of because he's everywhere and into everything. If a door gets left open, he runs out it but not before releasing his trusty side kick seen with him in the picture on the deck. The dog runs in one direction, and then Liam runs in the other direction. Without fail, the big kids go chasing the dog and leave Liam to run free. I yell to them to get him instead of the dog, and they yell back "She won't come back if we don't catch her!" I tell them Liam won't come back, either. They're response? "We don't want him to come back!" They do love their little brother, but I suppose they wouldn't mind a little break from his constant busy-ness.
This past weekend, Byron and Aiden were out in the backyard doing work and I was upstairs cleaning Liam's room. Apparently they left the garage door open, so Liam got out. We were looking everywhere and yelling for him when we heard a neighbor from way down at the other end of the street yelling, "Hey! Is this your kid?" as he walked up with Liam wearing only a pull-up. Yep. That was our kid. It seems the guy left his front door unlocked, so Liam strolled on in and went to play in his son's bedroom. The guy let go of Liam's hand when he saw us, so the little booger darted into ANOTHER unlocked house. This house was owned by a police officer who happens to have a very large dog. When the thing sits, it's as tall as Aiden!!! Liam ran in and stood behind this huge dog waving at us. The door was opened, so we yelled and yelled for the owner to come downstairs. It felt like it took a century to finally get his wife to hear us and come down. Well, she didn't hear us. She heard her bathtub turn on and realized there was a little guy standing in her bathroom staring at her as she slept in her bed. Thankfully, she found the humor in the situation.
Then on Tuesday, I found that Liam had climbed up onto his 3 inch window sill and was balancing on it. If he'd lost his balance, he'd have gone through the glass and fallen three stories onto concrete. Yeah. Not so good even for the invincible Liam. This kid is going to be the death of me...if not himself.
So tomorrow we have a friend coming over to help turn the house into Alcatraz. Locks and alarms will be everywhere. We're screwing baby gates in front of every upstairs bedroom window so he can't fall out. He is practically Houdini, so I figure lots of these efforts are going to only be temporary fixes, but I'll take what I can get.
Like I said, Monday is the first day of summer school and boy am I grateful...and tired.
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