I just want to wish anyone and everyone who stumbles across this blog a Merry CHRISTmas.
If you happened to be offended at that phrase...BITE ME!!! It's my blog
e mërkurë, 19 dhjetor 2007
e martë, 18 dhjetor 2007
I read this on a blog for parents of special needs kids:
I took a friend of mine who is visually impaired to church with me this morning. Several of the children in the congregation were fascinated with her Braille Bible. One of the adults came over to see what the kids were so excited about, and Ellen told the woman, "Oh, well, I was telling them how bumpy the road to salvation is."
e mërkurë, 21 nëntor 2007
Almost Alone at W x O
Last Saturday I was alone in Won by One with Michael. I love this kid. He's great. He plays catch, missies the ball, and runs after it with the biggest smile he can muster. He doesn't care about win/loss. He only wants to play.
Anyway, after awhile Nathan comes in too. Now Mike I could of handled, but Mike AND Nathan....
Then comes one more kid. I hate to say it, but I've forgotten his name off hand.
I called for help. And in comes Lori
Lori is an amazing lady...if you don't believe me...ask her. She's Michael's mom. And she is raising her other son, and she's actually married to their dad...HAPPILY.
No, I'm kidding. Adam is a great guy.
When my sister and her family were robbed, Adam sought me out to pray about it with me.
These are some great people.
Anyway, after awhile Nathan comes in too. Now Mike I could of handled, but Mike AND Nathan....
Then comes one more kid. I hate to say it, but I've forgotten his name off hand.
I called for help. And in comes Lori
Lori is an amazing lady...if you don't believe me...ask her. She's Michael's mom. And she is raising her other son, and she's actually married to their dad...HAPPILY.
No, I'm kidding. Adam is a great guy.
When my sister and her family were robbed, Adam sought me out to pray about it with me.
These are some great people.
e enjte, 1 nëntor 2007
God's good
See my sidebar for the Kinny Kids blog. Scott Kinny is my church's children's pastor. Looks like he's going to have some news for improvements to the Won by One ministry.
Thanks God
Thanks God
e premte, 19 tetor 2007
Me???
The kids ministry at my church has a monthly newsletter. They've chosen me for one of the spotlights for next mo. Wow. They need a picture. I hope I don't scare anyone.
e shtunë, 29 shtator 2007
Links in a Prayer Chain
On Tuesday, I sent out a prayer request via email to the children's workers of my church. It was for my sister, Melanie. Meme [as I call her] may have some form of kidney disease. We're still waiting word.
On Thursday, I came home to a letter [remember those?] from Wanda, it was dated on Wednesday.
She was wanting me to know she was in prayer for Meme.
Wanda's son is named Nathan. Nathan is 13 or 14 years old, but functionaly he's 1 or 2. I work with him and other special needs kids at our church she is truely a Godly woman.
On Thursday, I came home to a letter [remember those?] from Wanda, it was dated on Wednesday.
She was wanting me to know she was in prayer for Meme.
Wanda's son is named Nathan. Nathan is 13 or 14 years old, but functionaly he's 1 or 2. I work with him and other special needs kids at our church she is truely a Godly woman.
e diel, 5 gusht 2007
Blake Update
We took Blake to John Hopkins in Baltimore, MD this past week for a second opinion. His last two treatments didn't work and he continues to get worse. It didn't go as well as we hoped. The doctor undiagnosed him and has no idea what is wrong with him. Since there is no longer a diagnosis, there is no prognosis, or treatment options. The doctor did take some bloodwork which we will get the results in two months. He also is writing a letter of recommendations to Blake's doctors for muscle and nerve tests. So we are back to square one with diagostic tests.
Blake's current condition is that he still can't walk, has between one and three episodes of pain or aggitation daily with his legs and sometimes arms, and is fed completely through a feeding tube. His behaviors have become so severe, that he was admitted recently for a five day stay at the psychiatric institute. He has regained some fine motor skills and continues to retain his cognitive skills fortunately. He is far from his baseline overall.
Blake's current condition is that he still can't walk, has between one and three episodes of pain or aggitation daily with his legs and sometimes arms, and is fed completely through a feeding tube. His behaviors have become so severe, that he was admitted recently for a five day stay at the psychiatric institute. He has regained some fine motor skills and continues to retain his cognitive skills fortunately. He is far from his baseline overall.
e premte, 27 korrik 2007
Update on Blake
Hi Roger,
Blake is not doing well. He was in the hospital for 18 days in June. He went in for a different treatment and while there his swallowing muscles became uncoordinated, and he was aspirating food/drink into his lungs. So he was treated for pneumonia and had to have a feeding tube. He is now solely fed through his tube. He recently had a swallow study that showed he was no longer aspirating but still had trouble coordinating those muscles and he refuses to eat and drink anything now, so is still fed through the tube. On July 9, he was admitted to the psychiatric hospital because he was uncontrollable. He stayed 5 days and they increased his medication. He is a little calmer, but still has outbursts and extreme oppositional defiance and ocd. Physically he still can't walk but has shown some improvement with fine motor skills. He talks but only to say opposite things - no real functional language.
We are going to John Hopkins in Baltimore Maryland August 2 for a second opinion. He has had two treatments that didn't work at all. Before he receives a 3rd more invasive treatment, his doctor wanted us to get the 2nd opinion to make sure he doesn't have something in addition to sydenham's chorea. Hopefully the doctor there can give some answers and treatment suggestions that will work.
Blake is not doing well. He was in the hospital for 18 days in June. He went in for a different treatment and while there his swallowing muscles became uncoordinated, and he was aspirating food/drink into his lungs. So he was treated for pneumonia and had to have a feeding tube. He is now solely fed through his tube. He recently had a swallow study that showed he was no longer aspirating but still had trouble coordinating those muscles and he refuses to eat and drink anything now, so is still fed through the tube. On July 9, he was admitted to the psychiatric hospital because he was uncontrollable. He stayed 5 days and they increased his medication. He is a little calmer, but still has outbursts and extreme oppositional defiance and ocd. Physically he still can't walk but has shown some improvement with fine motor skills. He talks but only to say opposite things - no real functional language.
We are going to John Hopkins in Baltimore Maryland August 2 for a second opinion. He has had two treatments that didn't work at all. Before he receives a 3rd more invasive treatment, his doctor wanted us to get the 2nd opinion to make sure he doesn't have something in addition to sydenham's chorea. Hopefully the doctor there can give some answers and treatment suggestions that will work.
e martë, 24 korrik 2007
Blake
Blake is one of my boys. I've not seen him for a long time because he's been sick.
His mom emailed me at work today and if I get her permission, I'll post that email to let you know how he is.
Pray for him.
His mom emailed me at work today and if I get her permission, I'll post that email to let you know how he is.
Pray for him.
e premte, 22 qershor 2007
Sarah
My mom and my 8-year old niece, Sarah, are here. Tomorrow night I'm taking her into the Won by One class with me. I can't wait to see her there. We're probably not going to stay, that'll be up to her highness.
I am so proud of her for wanting to meet her Unky Roggie's kids. [BY THE WAY, SHE IS THE ONLY ONE THAT CAN CALL ME THAT!!!!]
My sister, and brother in law are very fond of the word "retard". Example, you dropped ketchup on your shirt...RETARD!!! I hate it when they do that.
A few months ago, Sarah and her daddy were watching a movie. In that movie there was a character who was a racist. I don't know the movie, but the "N" word was used. My brother in law, was very good. He took that moment to teach Sarah that this word was bad, and very hurtful to people, and that she should not use it.
What's the difference? The "N" word is bad. Horrible, and stupid. However, is "Retard" better? I don't think so. Not at all.
I know "retard" has it's place, as in "Hoover Dam retards the flow of water" but when used as a casual insult....I cringe.
Oh, don't get me wrong, my sister and brother in law would never walk around calling my class "retards" they know better. They understand that it's inappropriate. I just hope that, in a few years, Sarah will take whatever she learns tomorow and has compassion on kids like that.
She's such a good girl.
I am so proud of her for wanting to meet her Unky Roggie's kids. [BY THE WAY, SHE IS THE ONLY ONE THAT CAN CALL ME THAT!!!!]
My sister, and brother in law are very fond of the word "retard". Example, you dropped ketchup on your shirt...RETARD!!! I hate it when they do that.
A few months ago, Sarah and her daddy were watching a movie. In that movie there was a character who was a racist. I don't know the movie, but the "N" word was used. My brother in law, was very good. He took that moment to teach Sarah that this word was bad, and very hurtful to people, and that she should not use it.
What's the difference? The "N" word is bad. Horrible, and stupid. However, is "Retard" better? I don't think so. Not at all.
I know "retard" has it's place, as in "Hoover Dam retards the flow of water" but when used as a casual insult....I cringe.
Oh, don't get me wrong, my sister and brother in law would never walk around calling my class "retards" they know better. They understand that it's inappropriate. I just hope that, in a few years, Sarah will take whatever she learns tomorow and has compassion on kids like that.
She's such a good girl.
e martë, 19 qershor 2007
Is God a noun
I know that's a really childish question, but it came from a then 7 year old, so what were you expecting?
But seriously though. It raises a good point. Grammatically speaking God is:
Just a thought
But seriously though. It raises a good point. Grammatically speaking God is:
A noun: A noun is a person; place; thing or idea. I'd I call God, God. He was, He is, He's going to stay that way. He calls Himself "I am". This makes God a noun.
An adjectives God is the ONLY way to describe Him.
A verb: Once you accept His love and His grace through His Son Jesus...then He becomes God in your life.
Just a thought
e hënë, 18 qershor 2007
The very few---if any--of you that read this, know that I work with Special Needs kids at my church at the Saturday evening service every other week.
I wasn't on this week, but I had to go into the room for a second.Two TRUE stories:One volunteer, Maggie, had her daughter, Grace, with her. Grace is about 5 years old I guess and has Down Syndrome. She is one of the sweetest, most open and loving children in the world. When I stuck my head in she invited me to play catch...so of course I had to do it. I also was blessed with a hug from her earlier.
She asked me about Nathan. Nathan is our oldest child and our youngest child. He'd 13 years old, but mentally/functionally he's about 1 - 2 years old. Grace wanted to know where he was, because it is so important to her to make sure that Nathan is included.
What a wonderful thing that is. Grace truly epitomizes the meaning of her name.
On my way out the door and back to main church service, I saw Nathan and his dad--Don--coming down the hall. He is a beautiful child. His eyes are always bright and alive. He loves to jump and rock back and forth and clap. He loves music, if there's not any then I am thoroughly and totally convinced that God has put the very music of Heaven in Nathan's heart.
When I passed Nathan in the hallway, I stopped and gave him a hug and told him hello. I felt a sharp pain in my just below my cheek. He bit me.Now remember, he is severely mentally retarded so he had no idea what he had done. Much like a teething 2 year old wouldn't understand.When I looked in the mirror, there was no blood but there was a mark.
My first thought: I am 38 years old and I finally get my first hickey came from a 13 year old child that didn't know what he was even doing.
I wasn't on this week, but I had to go into the room for a second.Two TRUE stories:One volunteer, Maggie, had her daughter, Grace, with her. Grace is about 5 years old I guess and has Down Syndrome. She is one of the sweetest, most open and loving children in the world. When I stuck my head in she invited me to play catch...so of course I had to do it. I also was blessed with a hug from her earlier.
She asked me about Nathan. Nathan is our oldest child and our youngest child. He'd 13 years old, but mentally/functionally he's about 1 - 2 years old. Grace wanted to know where he was, because it is so important to her to make sure that Nathan is included.
What a wonderful thing that is. Grace truly epitomizes the meaning of her name.
On my way out the door and back to main church service, I saw Nathan and his dad--Don--coming down the hall. He is a beautiful child. His eyes are always bright and alive. He loves to jump and rock back and forth and clap. He loves music, if there's not any then I am thoroughly and totally convinced that God has put the very music of Heaven in Nathan's heart.
When I passed Nathan in the hallway, I stopped and gave him a hug and told him hello. I felt a sharp pain in my just below my cheek. He bit me.Now remember, he is severely mentally retarded so he had no idea what he had done. Much like a teething 2 year old wouldn't understand.When I looked in the mirror, there was no blood but there was a mark.
My first thought: I am 38 years old and I finally get my first hickey came from a 13 year old child that didn't know what he was even doing.
e diel, 17 qershor 2007
First Blog
Hello and welcome to the first ever posting of The Purple Plastic Piano People.
My name is Roger. I go to Seacoast Church in Charleston SC. After attending this church for about 10 years, I've finally found my special place. I had never thought about working with kids, but one day I saw an opportunity to work with special needs kids. I started to pray and ask God if He wanted me to do it. I didn't have to ask that question. Instead I asked Him for the opportunity to make the proper contact.
Long story short, I've been working with that ministry for a few weeks now. We call it Won by One. Because our souls, our very lives have been Won by the One that loved us enough to give His life.
I called this blog Purple Plastic Piano People because I am in Toastmasters International. That is a club that promotes the art of public speaking. Every year we hold a series of speech competitions.
For the 2007 contests, I had NO idea what I was going to speak in. Then I recalled seeing one of our autistic kids, Blake P, play a purple plastic piano. I turned our CD player down and I gestured to Blake. He was playing "Joy to the World"
My speech was on the fact that we all have something that we can use to return our love to our wonderful Lord.
I'm going to try and post an audio copy of that speech sometime.
For now, this blog will be open for anyone to read and comment on. I'd like to open it up to members to post as well.
If you work at Seacoast with the Won by One ministry, if you work with the other children, if you have a special needs child or if you just want to add something POSITIVE, then please do.
Keep in mind a few rules:
1. I will NOT tolerate insults, or jokes about special needs kids or adults. If you've a funny story about something with a kid or an adult, please add it. But nothing mean. It will be deleted.
2. I am a Christian, but this doesn't mean that this has to be a Christian only site. However, I will NOT allow arguments, debates etc. about theology.
3. I am NOT a theologian. Please do not ask me questions like: "Where is Heaven?" or "Did Adam have a belly button?"
4. Have fun. This is NOT meant to insult those with special needs. But, we can all laugh at life itself.
I'll add more later
Rog.
My name is Roger. I go to Seacoast Church in Charleston SC. After attending this church for about 10 years, I've finally found my special place. I had never thought about working with kids, but one day I saw an opportunity to work with special needs kids. I started to pray and ask God if He wanted me to do it. I didn't have to ask that question. Instead I asked Him for the opportunity to make the proper contact.
Long story short, I've been working with that ministry for a few weeks now. We call it Won by One. Because our souls, our very lives have been Won by the One that loved us enough to give His life.
I called this blog Purple Plastic Piano People because I am in Toastmasters International. That is a club that promotes the art of public speaking. Every year we hold a series of speech competitions.
For the 2007 contests, I had NO idea what I was going to speak in. Then I recalled seeing one of our autistic kids, Blake P, play a purple plastic piano. I turned our CD player down and I gestured to Blake. He was playing "Joy to the World"
My speech was on the fact that we all have something that we can use to return our love to our wonderful Lord.
I'm going to try and post an audio copy of that speech sometime.
For now, this blog will be open for anyone to read and comment on. I'd like to open it up to members to post as well.
If you work at Seacoast with the Won by One ministry, if you work with the other children, if you have a special needs child or if you just want to add something POSITIVE, then please do.
Keep in mind a few rules:
1. I will NOT tolerate insults, or jokes about special needs kids or adults. If you've a funny story about something with a kid or an adult, please add it. But nothing mean. It will be deleted.
2. I am a Christian, but this doesn't mean that this has to be a Christian only site. However, I will NOT allow arguments, debates etc. about theology.
3. I am NOT a theologian. Please do not ask me questions like: "Where is Heaven?" or "Did Adam have a belly button?"
4. Have fun. This is NOT meant to insult those with special needs. But, we can all laugh at life itself.
I'll add more later
Rog.
Abonohu te:
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