Being pulled away from my home daily will take away from my computer time so bear with me.
I spent all day yesterday re-grouping with Michelle to get grants written. The day before at the sign up booth all day and getting ready to go back today.. The kids are starting to get colds...OH NO, CAMP IS FRIDAY. Tressa is in perfect health (as usual.) I am fitting in two doctor visits today to be sure camp is still on for tomorrow. I am planning to have our family celebration for her birthday tonight as she is getting items for camp as well as many other goodies. I will post photos. I need to run, setting up at Walmart today, many new families will join us this year. It is wonderful!
Thursday, November 6, 2008
Tuesday, November 4, 2008
Day of volunteering
I spent the day in front of Walmart collecting money for our holiday party and helping educate families in Cape Coral. BOY DO WE NEED HELP!
I found that many people still pity our children. NO NO NO My child needs no pity, she need opportunity! Then the topper was this young man.. probably one of those who have made a U-TUBE video...He came up during a busy moment and dropped a dollar into the bucket with a tilted head he said what's this for. I quickly said we are having a holiday party for families raising children with disabilities,we need to collect for expenses. He said great..and left. He comes back about 20 minutes later and says to me... You know I am so lucky we never had any of those god for sake ill kids with those horrible diseases in our family..... I take a VERY DEEP BREATH and begin to show him a picture of my beautiful daughter. At that very moment the manager of Walmart and the Sheriff deputy approach me to discuss other options for party help, my mind is twisting from one focus to another and my phone is ringing--been there right???. The young naive lad continues to offer his help at the party so maybe we could use him to set up, cook WHATEVER, he states--he works at Rumrunners restaurant in town and he continues on about his ill feelings of people who have disabilities. I ask him for his name and number so maybe we could have some private time to discuss how he might be useful for our group....... I needed him to LEAVE!!! Kaitlyn was due to come around the corner at any minute as she went into the store to go get a cheese burger from McDonalds (yes she is capable of doing that LOL) and in no way would I want this to be her social experience to such words he was using. SO tomorrow after coffee I will call the lad and invite him into the world of PODS Angels (PARENTS) in a nice way educate him on love he is missing out on in life. Ironically, I got him to put our Down syndrome magnet on his NICE CAR and he proudly drive by and honked so I knew he had it displayed proudly... I thumb up'd him and motioned I will call you tomorrow.... Lord, you will guide me with this young pup I am sure.
We made a small dent in our goal to get the hall fees paid although many folks said they are going to call to express their concern that the Hall fees are even put on us... One can only hope. Another option is moving the event to another location and having that donated to us. One day at a time. I will blog more tomorrow I am tired and have been away from the house all day so tat is where my attention needs focused.
Oh, Tressa failed to cooperate during home work time and ripped up her work stating she will just take the ZERO! ugh...after a day of trouble trying to take her clothes off in school???? ATTENTION...and camp (HER BIRTHDAY) is Friday.
I found that many people still pity our children. NO NO NO My child needs no pity, she need opportunity! Then the topper was this young man.. probably one of those who have made a U-TUBE video...He came up during a busy moment and dropped a dollar into the bucket with a tilted head he said what's this for. I quickly said we are having a holiday party for families raising children with disabilities,we need to collect for expenses. He said great..and left. He comes back about 20 minutes later and says to me... You know I am so lucky we never had any of those god for sake ill kids with those horrible diseases in our family..... I take a VERY DEEP BREATH and begin to show him a picture of my beautiful daughter. At that very moment the manager of Walmart and the Sheriff deputy approach me to discuss other options for party help, my mind is twisting from one focus to another and my phone is ringing--been there right???. The young naive lad continues to offer his help at the party so maybe we could use him to set up, cook WHATEVER, he states--he works at Rumrunners restaurant in town and he continues on about his ill feelings of people who have disabilities. I ask him for his name and number so maybe we could have some private time to discuss how he might be useful for our group....... I needed him to LEAVE!!! Kaitlyn was due to come around the corner at any minute as she went into the store to go get a cheese burger from McDonalds (yes she is capable of doing that LOL) and in no way would I want this to be her social experience to such words he was using. SO tomorrow after coffee I will call the lad and invite him into the world of PODS Angels (PARENTS) in a nice way educate him on love he is missing out on in life. Ironically, I got him to put our Down syndrome magnet on his NICE CAR and he proudly drive by and honked so I knew he had it displayed proudly... I thumb up'd him and motioned I will call you tomorrow.... Lord, you will guide me with this young pup I am sure.
We made a small dent in our goal to get the hall fees paid although many folks said they are going to call to express their concern that the Hall fees are even put on us... One can only hope. Another option is moving the event to another location and having that donated to us. One day at a time. I will blog more tomorrow I am tired and have been away from the house all day so tat is where my attention needs focused.
Oh, Tressa failed to cooperate during home work time and ripped up her work stating she will just take the ZERO! ugh...after a day of trouble trying to take her clothes off in school???? ATTENTION...and camp (HER BIRTHDAY) is Friday.
Monday, November 3, 2008
Jordan's arm has a 2nd break, new cast, new color
When the cast was removed this morning and they took x-rays another break was discovered. It seems the one inside the moving part of his elbow is healed although the one on the upper arm bone coming off the elbow was more definite a break than the first x-ray had shown. I was told this break may likely require a pin. That the bone in the 2nd break takes longer to heal and if in 3 more weeks we do not see improvement then it will require surgery and a pin put into the bone. My first reaction was lets try the lesser of two evils and recast today. Jordan's arm was full of blisters where the cast had been and when it came off he immediately scratched tearing the skin to open sores.... so this time we have a sock, some cotton gauze and a regular old fashion cast which CAN NOT GET WET!!! Remember Jordan goes to camp Friday... Camp with a pool, Camp with pontoon boating, canoes, creeks, etc... I pray it stays in the cold snap for 3 more weeks. He doesn't seem effected in the least other than not really excited to have a cast on his arm although he resistance is less than the first time. I pray for bone healing!!! Christmas with surgery and a pin just doesn't sound fun.
A kitchen break in ...UGH
I woke up to lights on in the kitchen... It makes me heart sink. I first yell for Tressa to respond.. she has a perky voice so I know her body is not in distress from over doing sugar, food or whatever... I check the door. She has chipped away wood to get to the closure to pop it open. Bigger dead bolts with longer posts need purchased today. It might be time for full chains and paddle locks for the frig..Right now I have the plastic straps which usually do it for me to find her (daytime.) New readers, she has Prader-Willi syndrome; http://www.pwsausa.org/
In her room I find the frozen ice cream machine container (no more ice cream) then a chocolate frosting container empty, a bag of bagels and container of cream cheese (strawberry) GONE! The amount of food has caused her body to function (excess poop) so her overnight pull up is hidden and she has a mess...She has sat on my couch to change, so YEP it is a mess! Disaster from her trying to clean up in the bathroom, good morning!
My goal first is "HOW" so I gently start talking about counting up the food she ate for her "list" no punishing tone, just collecting INFORMATION. Then I move into "Did someone forget to lock the kitchen?" (I know I locked it) She says "No" Oh, so Tressa how did the kitchen door open? Can you show me? She gets the screw driver from her bottom drawer and proceeds to show me. The neighbor came over to help tighten the toilet to the floor and she had to use the bathroom..I wasn't thinking...so she got the screwdriver out of his bucket of tools.. always thinking and planning..
She gets into the tub, I begin the clean up process.. She did say she didn't know why she did it.. No problem, I can not understand PWS either..so I say my serenity prayer, yes one day at a time. Tell her our plan to come get me when she needs something from the kitchen so we can get it on the list FIRST and not after. She says, OK. Anything more and it becomes too overwhelming.
Lucas has on some new jeans that light up lights on a fire truck. He is using them as self stem comfort and not hitting himself so much.. A good thing.
Keirsten and Steven have the garbage out to the road with min. frustration...and off to school they go.
Jordan has his cast coming off this morning, my day moves forward. Oh.. it is 7:30 am now...time for coffee.
In her room I find the frozen ice cream machine container (no more ice cream) then a chocolate frosting container empty, a bag of bagels and container of cream cheese (strawberry) GONE! The amount of food has caused her body to function (excess poop) so her overnight pull up is hidden and she has a mess...She has sat on my couch to change, so YEP it is a mess! Disaster from her trying to clean up in the bathroom, good morning!
My goal first is "HOW" so I gently start talking about counting up the food she ate for her "list" no punishing tone, just collecting INFORMATION. Then I move into "Did someone forget to lock the kitchen?" (I know I locked it) She says "No" Oh, so Tressa how did the kitchen door open? Can you show me? She gets the screw driver from her bottom drawer and proceeds to show me. The neighbor came over to help tighten the toilet to the floor and she had to use the bathroom..I wasn't thinking...so she got the screwdriver out of his bucket of tools.. always thinking and planning..
She gets into the tub, I begin the clean up process.. She did say she didn't know why she did it.. No problem, I can not understand PWS either..so I say my serenity prayer, yes one day at a time. Tell her our plan to come get me when she needs something from the kitchen so we can get it on the list FIRST and not after. She says, OK. Anything more and it becomes too overwhelming.
Lucas has on some new jeans that light up lights on a fire truck. He is using them as self stem comfort and not hitting himself so much.. A good thing.
Keirsten and Steven have the garbage out to the road with min. frustration...and off to school they go.
Jordan has his cast coming off this morning, my day moves forward. Oh.. it is 7:30 am now...time for coffee.
Sunday, November 2, 2008
Time change struggles...
The morning started VERY EARLY and the day has been a bit off center. Mandie came, I left to visit Kory. I got the chills when I drove into Ft Myers seeing all the Harley riders for birth defect fundraising, Amazing turn out for the event. Upon returning home I stopped to get a few things at walmart. The kids gave Mandie a rough time today, I returned home early for the schedule to stay on track. Mandie has to jab me with any Sarah Palin info she has gathered from her last visit. Lots of wining and crying, they just do not get the hour change I guess.. my break is coming right??? FRIDAY CAMP!
I realized that Friday the kids leave for camp and I get the weekend off ; BUT, BUT, BUT..... no school the following Monday and Tuesday...lol can you believe that, so much for planning. I have a few busy days the next couple of weeks to save the holiday party ($$$$) the hall fees must be paid by the 19th and no funds have been gathered so it is on me to figure out.
I realized that Friday the kids leave for camp and I get the weekend off ; BUT, BUT, BUT..... no school the following Monday and Tuesday...lol can you believe that, so much for planning. I have a few busy days the next couple of weeks to save the holiday party ($$$$) the hall fees must be paid by the 19th and no funds have been gathered so it is on me to figure out.
Saturday, November 1, 2008
ICE CREAM MAKING
Today we made ice cream with skim milk, egg whites, vanilla and sugar substitute and it tastes VERY GOOD!
We have one problem.... we burned up our ice cream maker :0(
A cup of ice cream and they are all sleeping soundly. I was trying to find something to treat them but not candy. We had baked chicken and veggies for dinner as we waited for our ice cream to freeze.
Photos to come...HALLOWEEN
Halloween was loads of fun for the children. They walked all around the neighborhood stopping in to say "Happy Halloween" and "Thank you" So cute. Many of the neighbors had made special time and treats for the (neighborhood) kids. Our neighborhood is known to have the bigger city kids come in car loads to trick or treat. It was a beautiful night to be outside as well.
Our group was large as the kids and grand kids came out together. The loot... holy cow! I have HUGE cooking soup pots full in my closet of candy. Tressa had some struggles although we had near to the last stop a house to get rice crispy treats which she knew she was going to eat when we got home. She did get into it and had about 1/2 gone before we got home although over all she did WONDERFUL. AND had a perfect day. She cried a little because i missed the parade and she looked for me. Kaitlyn's bus came a little late which made the ride to the parade impossible to make. She was OK, other than the school party which I sent extra wild berry jell-o for and gave her permission to have one small cookie.... She was so good, had basically lettuce for dinner, it all works out. 600 calories a day any way that works... one day all in treats??? Well only one day here and there. THANK YOU FOR THE PLAY-DO TREAT HOUSES!!!!
I will down load photos later, I had such a busy day getting bills paid, food shopping, last minute items to pick up for a house full of people. Off to replenish milk...you know the home delivery milk man wasn't something that should have been lightly given up.lol
Our group was large as the kids and grand kids came out together. The loot... holy cow! I have HUGE cooking soup pots full in my closet of candy. Tressa had some struggles although we had near to the last stop a house to get rice crispy treats which she knew she was going to eat when we got home. She did get into it and had about 1/2 gone before we got home although over all she did WONDERFUL. AND had a perfect day. She cried a little because i missed the parade and she looked for me. Kaitlyn's bus came a little late which made the ride to the parade impossible to make. She was OK, other than the school party which I sent extra wild berry jell-o for and gave her permission to have one small cookie.... She was so good, had basically lettuce for dinner, it all works out. 600 calories a day any way that works... one day all in treats??? Well only one day here and there. THANK YOU FOR THE PLAY-DO TREAT HOUSES!!!!
I will down load photos later, I had such a busy day getting bills paid, food shopping, last minute items to pick up for a house full of people. Off to replenish milk...you know the home delivery milk man wasn't something that should have been lightly given up.lol
Thursday, October 30, 2008
Eye patch not a hit....
Jordan is ordered to wear an eye patch on his right eye for two hours a day during close up work...reading, matching, computer, table work... if a picture tells a story.. He is not doing well. I am sending the box to school because they said other children at school wear the patch and they can make it "cool." Here it was a struggle and nothing I was doing was making it any where near cool for him. It was very apparent his weak eye was having to work harder. This will be another process and come in time.
Wednesday, October 29, 2008
Costumes and decorations...
As hard as I looked today I could not find a police officer costume for Tressa that was not too small or to sexy. Then to find a nice child's story book about police officers..(for school their costume must match a story book they bring to school as well) Case solved she is Hanna Montana. A 75% off clearance on Manna costumes at the Disney store sent me into another direction. She was thrilled when she came home, all is good. I dug out the decorations and FORGOT how annoying the door greeter is which goes off by motion and howls at the moon... Some things you wish batteries would run out in NEVER DO. So here is the run down right now
Keirsten; Gothic fairy
Kaitlyn; Bat girl
Steven; Ghostbusters
Jordan; Captain Hook
Tressa; Hanna Montana
Lucas; Doctor
Coldest day on record here in 100 years...
It didn't seem so cold although we were prepared and wore warm clothing today. Actually opened windows at dinner time as it felt a bit warm.. Kaitlyn was at the Doctors and has psoriasis on her scalp so it takes Neutrogena T/gel shampoo soaking 5 mins and some ointment on her scalp that can not be within reach of the other children because it will remove layers of skin..... one more step to bedtime routine.. that might be a video we put on to this blog.. the medications dispensed...
Mandie brought over Tinker Bell Movie as Tressa has had a couple wonderful/Fabulous days at school. Miss Barbie came for Halloween baking and pumpkin painting..then Miss Vickie with speech and a Tink party so the night was full.
Tuesday, October 28, 2008
BURRRRRR
We went to the near by park tonight, Jordan did his home work at the park. The others played, Lucas walked up and down steps. FRESH COOL AIR.
Burrr it is cold this morning. low 50's...... IN FLORIDA IN OCTOBER!
Burrr it is cold this morning. low 50's...... IN FLORIDA IN OCTOBER!
Innocence Lost...
I remember when mine went...It is amazing how many people can go through life never knowing about true abuse. Mandie took her initial class on ZERO TOLERANCE in the world of child welfare this morning. She went to the class believing it would be much like all the other zero tolerance classes in past jobs...sexual harassment in the work place. NOT the case this morning. She said she was in a room with about 50 other employees for Developmental Disabilities of the state of Florida. She went on to say her eyes welled up a few times and when she looked around the room she didn't see anyone else.. I am sure it is because they have been in this type of class before.
She learned today that people with disabilities are abused at the rate of 90%. YES TRUE. She learned that 80% by care takers, people the person trusts and loves. All she could think about was her siblings. It hit hard when they described the "TYPICAL" person who gets abused... They described Kaitlyn, the person who loves everyone, trusts and has a free spirit. Then Jordan, the person who might be more difficult, trying on the patience of the care taker. She said then to think 90% of all, so her siblins will be abused....where her mind went. The class gave graphic visuals from autopsy's she described as shocking. She felt more the photos where more than her mind could handle this morning.
She mentally escaped the moment, into the thought of after the class driving to the Disney store to pick up her new Tinker Bell movie and going to a happy place.
Her need to talk to me was overwhelming... I explained why I feel it so important to have this house the forever plan for the children. That having a special needs trust with a board of directors watching over the kids is so critical in planning their future. That yes I understand they will out live me and possibly her. She seemed very changed and wanting to make plans to teach them protection for themselves. Although then she said that the instructor gave details about them trying to teach people with disabilities in group homes/nursing homes which every day they repeated what to do. She said when they mentioned Prader-Willi syndrome specifically as a person whom gets taken sexual advantage of because their desire to please for a rewards, she nearly lost it. Her mind went to all the contacts the kids have now and her feeling we can no longer send them to school...we can not trust anyone..... what if Kaitlyn gets in the bathroom and a male teacher goes in--she will not know- not to do as he says...What if she is at a friends home and someone does something, will she tell??? What about Jordan... she needed a break... I told her to watch Tinker Bell and we will talk tomorrow.. no worry they are safe today... we will plan tomorrow.
I worry every day and believe we are putting everything in place and keeping very visible in all the places the children go, we have to have some trust with the choices we put our children in. We have to watch for signs and hear what the kids tell us in verbal, body language or temperaments. all the ways they can tell us in their way.
I remember my first week in the child welfare system thinking the world was all bad..How can people even think of hurting someone in these ways.. (I will not give descriptive of what Mandie did hear today) It is unthinkable, our minds will never understand the why.. Again PREVENTION, the best we can do for our children.
She learned today that people with disabilities are abused at the rate of 90%. YES TRUE. She learned that 80% by care takers, people the person trusts and loves. All she could think about was her siblings. It hit hard when they described the "TYPICAL" person who gets abused... They described Kaitlyn, the person who loves everyone, trusts and has a free spirit. Then Jordan, the person who might be more difficult, trying on the patience of the care taker. She said then to think 90% of all, so her siblins will be abused....where her mind went. The class gave graphic visuals from autopsy's she described as shocking. She felt more the photos where more than her mind could handle this morning.
She mentally escaped the moment, into the thought of after the class driving to the Disney store to pick up her new Tinker Bell movie and going to a happy place.
Her need to talk to me was overwhelming... I explained why I feel it so important to have this house the forever plan for the children. That having a special needs trust with a board of directors watching over the kids is so critical in planning their future. That yes I understand they will out live me and possibly her. She seemed very changed and wanting to make plans to teach them protection for themselves. Although then she said that the instructor gave details about them trying to teach people with disabilities in group homes/nursing homes which every day they repeated what to do. She said when they mentioned Prader-Willi syndrome specifically as a person whom gets taken sexual advantage of because their desire to please for a rewards, she nearly lost it. Her mind went to all the contacts the kids have now and her feeling we can no longer send them to school...we can not trust anyone..... what if Kaitlyn gets in the bathroom and a male teacher goes in--she will not know- not to do as he says...What if she is at a friends home and someone does something, will she tell??? What about Jordan... she needed a break... I told her to watch Tinker Bell and we will talk tomorrow.. no worry they are safe today... we will plan tomorrow.
I worry every day and believe we are putting everything in place and keeping very visible in all the places the children go, we have to have some trust with the choices we put our children in. We have to watch for signs and hear what the kids tell us in verbal, body language or temperaments. all the ways they can tell us in their way.
I remember my first week in the child welfare system thinking the world was all bad..How can people even think of hurting someone in these ways.. (I will not give descriptive of what Mandie did hear today) It is unthinkable, our minds will never understand the why.. Again PREVENTION, the best we can do for our children.
Monday, October 27, 2008
ANSWER IS: Yes, the baseball team was all family
I got a few emails asking what event we were at. We just decided to go to the local park and play baseball, it is our family; Mandie and her son Carmelo, Michelle her son Ayden and her roommates girls; Kayla and Karrah. Myself, Keirsten, Kaitlyn, Steven, Jordan, Tressa and Lucas...13 of us. It took 2 hours to play one inning and then we called it a game and went to the playground. Miss Vickie met up with us with her grandson.
A VERY FUN day
After pumpkin cut and sun down
A pumpkin with a pattern......We had a great day and spooky night..... all this week we will be busy getting ready for Friday night's party. Every year our friends come to our house because we have lived in the same home/neighborhood since 1991 we know most all our neighbors, some secure FUN HOUSES to visit. The families await our visit even. Tonight Miss Vicky came over to practice her face painting and Mandie was into pumpkin carving. We will be painting pumpkins with Miss Barbie this week for the little ones can help..
No school, baseball fever
Mandie and Carmelo
One family=One team=One field; Pringle's up to bat, Nunley's in the outfield(this photo)
come on Ayden hit me in...(grandsons) Batter batter SWING!
Lucas in the outfield......Hey guys I see the ball.... I do not want to get up...
Melo get ready to run, Here comes the slammin Ayden, I hit it, I hit it.... RUN!!!!
The OTHER world series
Bases loaded and Kaitlyn up to bat......
The PRINGLE'S ROCK!
One handed batting is tough
Kailtyn slides into home plate.
Lucas just isn't finding the "fun" in any of this base ball game.. cried pretty much the entire game, did't want to hold the bat, touch the ball or walk let alone run. In time, we will keep trying.
Pringle's VS Nunley's
One arm Jordan
Steven gets it after a couple tries
Lucas isn't so much into it yet.
Kaitlyn catches for both sides--a natural, in her element.
Tressa connects with a little help from mom.
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