Purple Plastic Piano People

Great night

2009-06-27T23:54:00.004-04:00

I took over for Jessica tonight. I only had Nathan. So about 1/2 through the service, I took him for a walk around the church. We even went into "big church" for a few moments. I loved seeing him walk. He has this sort of a cross between a skip and a walk. I tried to do it too, but that's a bad idea with my age, weight, lack of coordination, etc.

New Friend

2009-03-15T00:40:00.001-04:00

Terri bought a new friend to us tonight. She's 5 years old and the "regular" room had too much activity for her. Her name is Ella and she's cuter than a bug's ear.

I think I have a new sweetie.

Short night

2009-01-03T21:31:00.001-05:00

I found out the hard way what one of our kids had for supper...or didn't have....
I won't go into detail, let's just say it made for a short night.

More Blessings From Blake

2008-12-28T09:58:00.002-05:00

Last night I went to church for the first time in about 2 weeks. I've been out of town for Christmas.
I popped into the Won by One room just in case I was needed, though it was not my week. Blake came in and at first he appeared to have some sort of medical issue [we almost thought seiziures] so I stayed.

Blake was ok, they weren't seizures,though we're not sure what they were instead. But, Blake was our only friend their that night. Blake built a box of some sort out of some toy blocks. He then jumped over them.

He pulled Miss Jessica over and pointed. He wanted her to jump too. Then he pulled me over. Mr. Roger is just 2 - 3 weeks shy of 40, short, out of shape [well maybe round is a shape] and extreamly uncooridnated. I didn't jump inasmuch as I stepped over it. Blake took me back and made me do it again.

The cool thing was that Blake gave me and Jessica high fives for our attempts. He is still practicing [for want of a better term] selective mutisim. His mom is learning ASL and Blake has learned to sign yes and no. He signed those for us and I taught him how to sign the bible verse for the day which was Jn 3:16.

When Jessica pulled out her guitar and was trying to tune it up before making up a song to go with the bible verse, Blake walked over and started "helping" by strumming. Jessica just let him do so while she tuned and sang.

Not only is Blake a blessing but so is Jessica.She's a music therepist and she loves these kids. I love seeing her interact with them using music as a bridge to reach through the haze of autisim or whatever the condtion may be,

I missed Ernest Smith delivering his first message but I know it had to be awesome. But I sure did not miss any blessings being with my friends in Won by One.

The Nutcracker

2008-12-19T23:09:00.001-05:00

This is NOT one of my Purple Plastic Piano People, but this was so cool, that I wish she was.

http://spotlight.news.yahoo.com/v/11076595

I just wish I knew how to post the video instead just the link

A Christmas Story

2008-12-12T11:58:00.001-05:00

First, Merry Christmas to all of my fellow Christians
Second, Happy Hanukkah to any Jewish Readers
Lastly, GOOD LUCK TO ANY ATHIEST READERS.

That said, let me tell you a Christmas story.
A few years ago, Maggie and her then 8 year old daughter were running errands. They stopped somewhere and after getting her daughter out of the car, Maggie turned to get a few items. When she turned around her daughter had disappeared. Maggie's heart stopped. Where is her daughter? She was 8 years old AND she has Down Syndrome. This was not good.

Praise God. Maggie found her daughter within seconds. She had climbed over a fence and into a Nativity scene that was set up nearby. In fact, she was sitting by a ceramic lamb and eating her Mickey D's fries. Maggie's daughter is named Grace. I call her Amazing Gracie. She is now 10 years old and is in the Won by One class at Seacoast, where I have the honor of being her teacher. Maggie also works in that ministry.

I tell you this story to tell you this: Gracie stepped into a Nativity scene and sat by that ceramic lamb and ate her fries. Had it been a real lamb, I know that Gracie would have shared her fries.

2000 years ago, God the Father and Creator of all of us stepped across the span of time and space and he stepped into the very first Nativity scene. He gave us—His lamb--the gift of His Grace by giving us His best, his McDonald's Fries so to speak, by giving His Son.

Thank You Lord for the Gift of Your Son,
In Jesus Name, Amen.

David

2008-12-08T21:49:00.003-05:00

I don't update the PPPP blog too often. I need to share this even though it's not related to the PPPP.

One of my oldest and dearest friends is named David. David works with kids at our church. David is sick right now.

I need to take time to tell anyone and everyone that may read this that David is just one of the best and purest people that I know.

He loves Jesus and he loves kids. That's all that matters to him. And that's really all that needs to matter. His capacity to love kids is so great that it's amazing. David has been told by some that men don't work with children. Davd knows his heart is different. He knows his heart is one that was created to love children.

David has cancer. When he was diagnosed and was in the hospital, he apologized to one of our kids leaders for not being there there weekend.

He has EVERY RIGHT to be just a little self centered here. He has every right to say "Hey! It's my turn to be taken care of!" But he still thinks of the kids first. What a man of God.

Jesus once told a bunch of kids to come over to him. The 12 tried to shoo the kids away. Jesus told them to mind their own business and to "Let the children come to me. Don’t stop them! For the Kingdom of God belongs to those who are like these children." Mark 10:14

When Daivd was told that men don't work with kids, his response was much like Jesus response. David knew he had to do it.

I wish we all knew what God wanted us to do. I wish we'd all do that task with David's sense of convition. If we could do that, we may just survive this place we call life.

Blessings of Blake

2008-11-22T23:20:00.002-05:00

Last week it wasn't my turn to work with the kids, so I went to the regular church service.

On my in I heard someone call my name, but I was unable to see whom it was. Just as the service was getting started, I saw Pastor Scott come up to the balcony where I was sitting. He came right up to me and told me that Blake was back.

Blake is the reason I call this blog Purple Plastic Piano People. He's the one that played that piano that night.

Blake's been out for about 2 years now. He was sick. I've been told that he had strep throat and it spread into his brain. This caused some problems for about 2 years staight.

But now he is back. He's still a long way to go, but thank God for this bright light of God's love. I am so glad that Blake is back.

One more Saturday [I hope]

2008-11-01T22:36:00.002-04:00

Last week there were no little ones in the class. As much as I love the kids, I was glad.

You see, I found out that I have the shingles. It started off when I was accidentally electrocuted a few days earlier. I knew I was in pain, until I went to the doctor I had no idea about the shingles.

It seems that the electrocution [which was mild, thanks for asking] pulled a Frankenstien's moster on a dormant virus.

Anyway, I have stayed at home ever since. I miss the kids, but I'd rather be at full health to be around the little tykes. They deserve that much from me.

I love those kids.

Ooops

2008-10-15T00:40:00.002-04:00

I took one of the kids to his mom at church Saturday night. I started talking with someone and then we found out we'd lost the kid.

After alerting the ENTIRE children's ministry we found him in the hallway playing with the waterfountain.

Buddy Walk

2008-10-05T20:52:00.001-04:00

I went on the Lowcountry DS Buddy Walk today. IT WAS AWSOME!!!!
I can't even begin to tell y'all about it. It was just so wonderful to see kids with DS and their supporters having a blast. I mostly love the friends of the DS kids.

During the actual walk, my group was just ahead of a group calling itself Josh's Army. They were chanting, cheering and just having a great time. One was even in a wheelchair due to a broken leg. He didn't let that stop him like I would have, he wanted to be there for Josh. I don't know Josh, but I hope to one day.

These are some awsome kids. You can learn a lot about Daddy God--our Creator--when you see how much how much love DS kids have.

In Awe

2008-09-28T01:16:00.002-04:00

I served with the Won by One tonight. I am constantly amazed by these kids.

Michael is autistic. He is also very bright. I started to tell him tonight's Bible verse. "Nothing can separate us...." and he then said it all by himself "Nothing can separate us from God's love" I asked him if he knew where it came from and he answered in a questioning voice "Geniuses?" Well no, it's from Romans 8:39 but that's ok.

First, I love the way he calls Genesis "Genousis". After all it was an ingenious Creator that made this place.
Second, I love the growth in this kid. It used to be that when Nathan came into the room, that Michael would say "Oh no!" He's still very uncomfortable around Nathan, but now he at least says "Hi" before he cacoons himself in our play tent for most of the night. He's a really sweet kid.

Thrive

2008-09-23T19:59:00.003-04:00

I gave an extended version of my Purple Plastic Piano speech at Thrive [over 40 singles] last Sunday in church

They said I did well, and I hope I did.

Wow

2008-09-16T22:01:00.001-04:00

I've been given an opportunity to give a revised version of my PPPP speech at church. It'll be at our Thrive [over 40 singles] meeting on Sept. 21

Cool

Buddy Walk

2008-09-07T00:00:00.001-04:00

I just signed up for the Lowcountry Buddy Walk on Oct. 5th
If anyone that reads this wants to join me, leave a comment.

Rog

200 Pomogranites and an Audience of One

2008-09-01T21:52:00.002-04:00

Seacoast church has many pastors. One of those pastors is Shawn Wood.

Shawn is younger than I am. A better singer than I am. Has a beautiful famiy which I hope to have one day. [His daughter Isabel or as I call her Isabelly Button is just too cute]. He's also a better speaker than I am [but, I am pretty good myself]. And now he's an author. Shawn makes me want to be sick, but he's also a nice guy. Have you ever met anyone that you wanted to dislike, but couldn't? Well that's Shawn.

Just kidding Shawn. Shawn's book is called 200 Pomogranites and an Audience of One. I've not read but the first few pages, but I can tell that it's going to be awesome. His theme is that there are too many people saying that we can do anything we set our minds to. Have you ever tried that? Think about it. If I could do anything I set my mind to, I'd:

Be taller than 5'5"
Have a girlfriend
Have a good job
Be an author
Be a super hero [Move over Batman, here comes Super Rog]
Be the world champion of public speaking

Well maybe some of that's achievlble but I'm not looking to take over the Justice League anytime soon, and I think that maybe Reese Witherspoon is seeing someone.

However, though we can't do "anything we set our minds to" there's still plenty we can do. The Bible says that we are "fearfully and wonderfully made" Ps 139:14

That means that God made each of us to fit into a unique place in His world.

I write this for two reasons:
1. At 39 I am just getting this into my thick skull. For years I wished I had other talents. Be they musicial, or acting or even sports [and I do not like sports]. I thought that my talents, whatever they may be, weren't good enough. Over the past few years, I've come to learn that they are. I have a talent for public speaking. I have a talent for working with special needs kids. I used to work customer service and now I know that I have a talent for putting up with jerks, and stupid people.

I have a place in the kingdom.

2. The other reason I write this is because of Sarah Palin. For those that have been living with your head in the sand lately, she is John McCain's running mate for president of the US. I am a Republican, and McCain has not been my favorite choice, but that's another issue. I like Ms. Palin. You see, from what I understand, a few months ago, some pompus arse doctor told then Alaska Gov. Palin to abort her unborn child. Why? Because the baby had Down's Syndrome. i.e. Why she should bring a less than perfect baby into this world. That child can't contribute etc.

Well kids, that's what another man thought too. His name was Hitler. Can you say Holocost?

Everyone has a place in God's kingdom. My friends, the Kinney's have three kids, with another on the way. Their youngest--for now anyway--is Princess Coleman. She has Down's. She is a wonderful little girl. She is about 1 and a half now, and she'd learning to walk and just now making some mama and dada type sounds. I love this kid. I love all their kids, but Coleman has my heart in a way that other kids--other than my niece--don't.

What can we learn from a DS kid? Well, for one thing, they love like no else seems to be able to. My friend Maggie has a 10 year old named Grace. Grace truely lives that word. She loves everyone she meets. And she loves them without terms. She wants to include other kids when she plays, even if they can't play.

I grew up often hearing the "N" word. I hate that word. But, I also hate the "R" word. Retard. For some reason, the mentally retarded, or DS kids, or autistic kids or other disabled kids and adults are still seen as fair target.

Please take the follwing things from this:

1. Love without condition.
2. Do NOT use the disabled as a target for your insulsts. There is NO difference between "retard" and the "N" word.
3. You have a place in God's world. Don't say that you can't sing, or preach or play ball or fill in the blank with whatever you want to. Look at yourself, God has created you, knitted you to do something special. It may be as simple as inviting someone out to dinner, and making sure that they are included. It may be as simple as making sure that you smile at someone, or just have a kind word.

You are an artist in something because you are a work of art yourself.

Another kids ministry

2008-08-25T10:46:00.002-04:00

I have been working on some Sunday nights with 3 - 5 year olds at Seacoast. I love it. There're no special needs kids, but it's fantastic to have this opportunity.

However, there's been a problem. One of the songs we sing goes: "I'm going to take God's promieses and hide 'em in my heart, hide 'em in my heart, hide 'em in my heart. I'm going to take God's promieses and hide 'em in my heart, hide 'em in my heart, hide 'em in my heaaaarrrrt." And of course there are accompanying motions.

There are other lyrics but I can't remember them. Now I have that one line and the hand motions running on the hamster wheel of my mind. Fortunaetnly it seems to override the squeeky sound that I normally hear.

Burn out?

2008-08-25T10:43:00.002-04:00

For about 4 - 6 weeks straight now, I've either been working w/ the kids on my regular weeks, taking over for someone that could not work, and one week I was out of town.

I'm getting a little burned out, but then I realize that every time I work with these wonderful kids, God is just so awesome.

I may need to take some time off soon, but I love these kids.

Worship

2008-08-08T08:40:00.002-04:00

I do NOT update this blog often enough.

My church holds a special service on the first Wednesday of each month. This past Wednesday some cool things happened:

1. Our children's pastor, Scott, was ordained. Scott is a very special man. Our church has over 1000 members at our main campus, and I think that Scott has most of the kids names memorized. I don't even know my own name at times. Thank God for Scott's commitment to kids.
Another cool thing about Scott is that, as the name and pronouns imply, he's a man. Churches like the one I grew up in did not encourage men [nor did they outright discourage] to work with kids. It was almost always some little old ladies.

2. We had some new twists on the worship experience:
A. One of the children's departments came out and sang two songs with us. The lyrics to one of these songs goes: "I am free to run...I am free to dance...I am free to live for you...". Those kids ran, danced, jumped and wiggled around for God. Which brings me to...

B. We are to worship God WITH EVERYTHING. The Bible says that: "David, wearing a linen ephod, danced before the LORD with all his might..." Look up EPHOD here

C. What we did differently was that we were encouraged to worship God differently than our "normal method". In other words if you were a quiet worshiper, you were encouraged to be loud, if you're loud then you were encouraged to be quiet and reflective. If you raise your hands, fine, add some dancing to it. You get the picture.

I tried to add jumping to mine as an outward expression to God and my great joy at being one of His. However, when a 5'5", 180 lb, uncoordinated man jumps up and down it is NOT pretty. I kept running out of breath and almost ran into someone while I was jumping in place.

I am posting this here because I need to point out something. The Won by One ministry [or as I call them, The Purple Plastic Piano People] are special needs kids. They often have their own way of expressing love. Some are very open because they do not have those internal mechanisms that tell them it's not always appropriate to hug and kiss. Some are very open to music and not any other stimuli. Others do not like music because it's too loud etc. but, they can express love just by being sweet or by building something out of Legos or wood blocks.

Take whatever God has given you and use it to express your love for Him.

Twins

2008-07-27T22:16:00.001-04:00

We had the twins this weekend. They've just turned 5, but they're on about a 3 year old level. I may be off on that a little.

They're cute boys. They love to sit in laps and give hugs.

That really makes this minisistry worth the effort.

Drive by Blessings

2008-06-17T19:20:00.003-04:00

I was to take over this past Saturday for the Won by One kids. No one showed up. I was hoping to make it to church services but I was detoured. My friends the Kinneys' have 3 and 1/2 great kids [the 1/2 is going to be here in a few months]

The youngest-so far-is Princess Coleman. She is abour 1 1/2 years old. Anyway last week, I was walking past the nursery at the church and a very unhappy camper was in there. I held my arms out and Coleman came right to me. I got a few sugars out of her, and got her to calm down a little.

See, she has Down Syndrome. DS kids are the most loving kids in the world.

Her daddy, Scott, is our children's minister. One night at a special function at the church, he mentioned Colman's situation. Two-well intiontioned--elderly ladies in front of me had that "OH NO!!! Poor baby..." reaction. What they don't know is that DS kids are a true blessing. They do not know "hatred". Of course, it can be argued that no one knows hatred and that it has to be taught, but it's different w/ these kids. They just love. PERIOD.

I thank God for this "side effect" of DS. Maybe we can all learn something from them.

In fact, I think I'll cut and paste this into my other blog.

How many kids was that again?

2008-05-11T14:09:00.003-04:00

I was able to work with the WXO kids at church last night. It was wonderful as usual. We had two. They're 4 year old twins. They're autistic.

Towards the end of the service, they got just a little anxious looking for their daddy so they kept running out of the room. One of the adult leaders for a different department had to make like a hockey goalie to stop them from getting out of the children's area.

Sounds bad right? Well not really. Not when both kids kept giving the grown-ups [yes that includes me] hugs and kisses.

I love these kids.

Won by One and that alone...for now

2008-04-21T22:13:00.002-04:00

I've been working with the Won by One [Special Needs] class at my church's main campus for about three years now. For the past 7 - 8 months I've also been working with 2 year olds at our North Charleston campus. This past Sunday I decided to quit the 2 year old's ministry.

I love the kids. But, my heart isn't in it. It's fun, it's good but my hear is with those special needs kids.

Maybe we'll get something for special needs kids started at North Charleston...if so I am SO there.

What a God

2008-03-23T20:46:00.002-04:00

My church had 34 services over the weekend. Now that includes satellite campuses, so it's not that we did church 34 different times.

Anyway, I wound up working 3 services with my Won my One kids. What a blessing those kids are.

They seem to understand that no one is perfect and it's OK with them that I and you too, screw up at times.

This was Easter. And at Easter we celebrate the Resurrection of Jesus. In a sense we can celebrate the fact that we've all second chances. I messed up recently. I changed my voice mail greeting and said "Thanks for calling. For English press one, for Spanish hang up and learn English." Here's why that was dumb. On Friday I saw that I had a missed call on my cell phone. It was a place I'm trying to get a job. They did not leave a message.

I'm thinking that it's possible that they were put off by my greeting. I'm going to try to call on Monday and a friend from church that works there will try to pop in to the HR offices and say something.

Hopefully, I'll get that 2nd chance.

YouTube - In My Language

2008-03-22T13:53:00.000-04:00

This was found on You Tube. It is a video documentary made by an autistic lady.
Very eye opening, and at the same time I closing.

YouTube - In My Language

Amazing Gracie Part II

2008-01-27T21:50:00.000-05:00

Last night our Bible verses were from Matthew. So I told the story...

One day some men came to Jesus and asked Him what the most important things were that God told them to do.

Jesus told them that there were two things:
1. Love God with all your heart.
2. Love others.

So while Nathan laid on the floor [unusual for him, he was tired I guess] and Colin played at the sink [turning the water off and on] and our other leader Miss Maggie [Gracie's mom by the way] made sure that Colin did not fall or burn himself with the hot water, I asked Gracie who she loved.

"Colin"
"Really, who else?"
"Nathan"
"Wow! Who else??
"Owen" [Owen wasn't even there this week]
"That's great. Who else?" [by this point, I'm wondering when she'll say Jesus or God]
"Momma!"
"You love your mom? I think that's great. Who else?"
"I LOVE YOU MR. ROGER"

That made my night. It was so worth it to be there.

Amazing Grace

2008-01-27T00:45:00.000-05:00

I don't update this blog often enough.

For those of you that are randomly pulling up blogs, you may not be here by mere chance. This blog is to tell you about my "adventures" with what I call The Purple Plastic Piano People My church has a ministry for special needs kids. I've been out of church for about a month now due to health reasons. Tonight [January 27th] was my first night back in some time.

Let me tell you about two of our kids. Nathan and Grace. Nathan is our oldest child, and our youngest child. He's 13 maybe 14 years old, but he's so severely mentally retarded, that he has the cognitive ability of a 1 or two year old. He drools, can't speak, walks with the unsteadiness of a toddler. Some of the other kids are scared of him. I don't blame them for that. They're too young to understand him. After all, he's the body of a small 13 year old, and is about a head or so taller than them, but he acts pretty much the same way they see an infant act.

Then there's Gracie. Grace is 10 years old and has Down Syndrome
Tonight's lesson was on Jesus command that we love God with all our hearts, and love one another. We asked Gracie who she loved, and she named everyone in the room...including Nathan.

Nathan probably doesn't understand any of this. Then again, maybe he does and just can't express it.

Isn't it wonderful that there is a little girl that loves so freely that she doesn't care that she doesn't understand?

Good News/Bad News

2008-01-14T20:57:00.000-05:00

I've been coughing a lot and had major sinus blockage as well as a sore throat.
So today, I went to the doctor's office and had a chest x-ray.

The good news is that my chest x-ray revealed that I have one.

The bad news is that I've bronchitis.

We'll see how I'm doing as time goes on Super Rog Fans

Last Night

2008-01-06T17:10:00.000-05:00

Ok so I missed Jim Cavizel [spellng???]
But, I did get the CD and the DVD for myself, I'll look at them later.
In the meantime, I did get to work with the kids last night. We had Nathan and two sisters that are about 5 and 6 years old. The oldest's name is Brook, and right this moment, I can't think of the youngest one's name.

They are so sweet, they hug EVERYONE they see. I know their being cared for by foster family right now, and I undertand that as soon some legal hoops are closed up they'll go to live with grandparents. I think they've fetal alcohol syndrome.

Pray for them. They are great, but they've been left severaly mentaly retarded by that awful treatment from their momma. They deserve better.

Jim Caviezel

2008-01-05T13:16:00.000-05:00

Jim Caviezel played Jesus in The Passion of the Christ will be at my church tonight

I'd love to be there, but I get to work with The Purple Plastic Piano People tonight.

Lord, bless those wondeful kids.

Merry CHRISTmas

2007-12-19T21:59:00.001-05:00

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

2007-12-18T17:27:00.000-05:00

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."

Almost Alone at W x O

2007-11-21T21:11:00.001-05:00

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.

God's good

2007-11-01T23:10:00.000-04:00

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

Me???

2007-10-19T20:56:00.000-04:00

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.

Links in a Prayer Chain

2007-09-29T21:10:00.001-04:00

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.

Blake Update

2007-08-05T21:54:00.001-04:00

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.

Update on Blake

2007-07-27T20:16:00.000-04:00

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

2007-07-24T20:06:00.000-04:00

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.

Sarah

2007-06-22T22:43:00.000-04:00

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.

Is God a noun

2007-06-19T19:03:00.000-04:00

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:

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

2007-06-18T18:15:00.001-04:00

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.

First Blog

2007-06-17T22:29:00.000-04:00

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.