Mom, My teacher is so mean.......

Tressa comes up to me as we are preparing for morning (clothes picked out, shoes at the door, book bags in order and in place) Mom, I do not want to go to school tomorrow.

I ask her why? Tress says; ,Mom, Mrs. McKenney is so mean. I ask her, She is mean, how is she mean? Tressa replies; She says to sit in my seat, line up, time for reading, and all that stuff. She makes me stay in my seat Mom.

OK, so not to be disrespectful to teachers..I DID NOT LAUGH! wanted to.

I start to explain that it is her job to teach her and if everyone was able to just get out of their seat and do what they wanted she would never learn to read. She wouldn't be able to learn to count or know about the world. So I explained she would never be able to go buy her own plane ticket, get to the airport, get on a plane and fly around the country visiting all her friends... She responds; Oh she is going to teach me to do that?... I tell her it is going to take a few teachers and some time because at 6 years old we have to sit in our chairs, learn to be in lines and learn about words and numbers to build up to traveling by herself to see her friends.

DAY AT THE PARK RAINED OUT

We have no school today, the kids had a big day at the park planned. We had games, food and cold drinks ready with all the supplies to fire up the grill.

Mother nature had us in the house with family and friends singing to the PlayStation Sing Star (Mandie brought when she saw the weather) and Wii American IDOL. The older kids were able to get out for a game or two of tennis in the front of the house. Some swimming was done between storms.. my children are outside kids, being in the house ALL DAY is like being grounded. lol

Music is a huge HUGE motivator in our house. Kaitlyn has a birthday on Friday and all she wants is her own clarinet,case,book and ID tag with her name in it. LOL Tressa followed by asking for a guitar for her birthday, a pink one. (It is in my closet) BEAUTIFUL! Thank you extended Birth family!!

The lasagna is in the oven, Kaitlyn and I ran to Walmart for her new glasses and picked up a bag of easy made salad so a warm tummy yummy dinner will end the day.

While in the eye glass center, the optician talked to me about goggles for outside play and sports. They are VERY DURABLE. I am considering a pair for both of them.

Once Kaitlyn got her new glasses on it was obvious she missed "seeing" things because everything was over drama-- WOW, Mom look at this...Mom look..all just items on shelves.

OPEN ADOPTIONS

Most of my children have very open adoptions. Some see their birth families as we have become extended family. Other families are in constant contact through the Internet and phone calls and see their birth child when possible because they are no longer in this state. Steven's grandparents whom had perm. custody have aged naturally and remain his grandparents as they love him so much as all the families do. Birth families and their relatives/friends are able to come into this blog now and keep up with their loved one through this avenue. It is a wonderful asset to many families who are not able to be with one another every day. I know that Steven's Grandparents have just joined through the help of their assisted living home staff..

THANK YOU!!!! We miss you so much around our table during the holidays, which are upon us. All those treats you made Pat will be remembered forever. Bob Steven continues to look at the airplane books and listen to the videos of classic music you spend endless hours taping. Take good care of them (staff), we will be over very soon.

Michelle 09-29-1981 HAPPY BIRTHDAY Darling

My #2 child by birth , LOL She is the middle child of the original three and continues to bare the burden title between the three of them..Now she is one of the oldest. Idled by many little siblings.

A day for a break.. no school tomorrow.

The little ones are gone, the teen middle school girls are primping... how many cans of hair spray/gel/oil/lifter can two girls go through in a month?

Tressa is at school with no glasses....UGH Tomorrow hopefully the new ones will be in. Kaitlyn's should also come in tomorrow so she can see again. She can see next to nothing without hers. Tressas' is to correct an eye that falls inward. So today she will have issues with that but she doesnt usually know it is happening. Just takes people off guard from never seeing her eye like that.

I need to replenish the cabinets with food, get some more supplies for our pinata, I think I need to do a web of twine to help with form because the content is going to be a bit heavier. It will still break open.. The content is person items like travel shampoo/conditioner, lotions, nail polish, all types of brushes, little make up "stuff" and travel size everything.. I am sure they will love it.

Thursday/Friday is school pictures so hair cuts are in order. I am having a woman come to the house and do all the kids. Keirsten wants highlights... She is 14 almost 15 and I really do not want to start that yet... She had it done a couple years ago as a gift, very mild, but the cost is crazy for up keep. I feel this is something she should have to work and pay herself to appreciate. She doesnt want to dust for the older women next door to earn any money...SHE IS LAZY! She knows it and seems proud of it. So I really believe earning it is the correct way to have it done and also continues to be mild until she is 18 and makes her own decision. I know it is hair and it grows back but it also breeds (in my opinion) attitude when they get to far out there too young... Speaking from a mom who has had all but one of her children run to get everything pierced/tatoo'd the day they turned 18 and all have smoked (not all now) and this mom hasn't smoked a day in her life... How does that happen>>>Parenting the hardest job, I love. My parents have always told me that I take the hard road..lol To me it is the ONLY road for my journey.

Rainy day activities today

It was tough to get out of bed this morning. All the kids were on my bed changing my morning news to cartoons. Jordan and Tressa were doing the footsie games, I call it. Feet to feet peddling like a bike. Lucas climbs on everyone laughing. Steven is a serous cartoon addict so he is focused on the TV and Kaitlyn little mama focused on making sure everyone stays on the bed, Lucas doesn't fall off. This makes Lucas crawl faster and more often.. It is always in unison.. WE'RE HUNGRY.. Hey, I made it past 8 this morning. Almost 9 am, we are going to make breakfast. Steven wants a bowl of cereal. Tressa is skipping snack so she can have a waffle with some sugar free Honey, Jordan is waffles, Lucas is grits/egg/cheese and Kaitlyn bagel with strawberry cream cheese. Keirsten is still gaining teen beauty sleep. My friend Gail can't believe we have this style of breakfast in the mornning although it is the same amount of time and energy because it is routine,they are all HAPPY. What more does a mom want....happy kids.

Now they are all putting their rooms in order, making their beds so we can start a Pinata for next weekend which is Kaitlyn and Michelle's BIRTHDAY PARTY. I am off to prep for a very messy project. We will keep you posted. Right now I believe we are doing a model head.. Kaitlyn's theme is grown up "make over" She has sample MaryKay to pass out in her gift bags and sample make up to use during the party. All teen colors. we will post the progress through out this week. It will be filled with personal care product samples... We have band candy in our house... new readers go to www.pwsausa.org and learn why. Halloween is our one exception and you will see it is VERY MONITORED although she misses none of the fun.

AREA GAMES WITH SPECIAL OLYMPICS TODAY

The middle of the night, about 3 am, I found Steven up rocking against his wall humming, lost in thought. I knew he was excited to get to his first area competition game in bowling. These will be peers from Sarasota to Naples and all in between. He asked me if he could put his team shirt on. I was able to get him back to sleep with a little calming. The kids were up, wanting waffles for breakfast by 8am. I knew I had to be at the bowling alley in Ft myers by 10:30 and my help is planning to be here at 9:30... They are excited.

We leave to the games shortly after 10, being the first time I was unaware how it all works. We were outside the back parking lot of Galaxy Lanes. IT WAS HOT IN THE SUN! The wait was LONG (we didn't need to be first on the scene)....Kailtyn was tired, hot and not wanting to do anything; eating again at 10:30 (more carbs) then in the sun until noon. We learned. Once inside, we made it to our lanes and within a 1/2 hour they were bowling. Both kids just couldn't pull it together. Parents are not aloud to coach their kids during competition so I felt terrible for them and they were loosing pride which was making things worse. I never taught them to "coach" each other. Steven throws an 8lb ball but didnt have one and was throwing the 6lb.. It was not going well. I decided if I can not coach I can use positive praise. The first nearly good throw, I start screaming yeah DO IT AGAIN... Your smokin ..HOT HOT HOT... all the things I would say when I was coach for them and they did it right.. It paid off, they started throwing with straight arms and locating their bodies to throw down the middle.. A STRIKE by Steven the crowd goes wild..I yell way to do it! Then Kaitlyn gets 7 down then a spare,,, sreaming loud it is the last frame.. she throws to end the game with mom screaming how great she is... I hear a parent in the back say ... You can not coach... I AM CHEERING ON MY CHILDREN, that is aloud!

As you can see THEY BOTH PLACED 1st in AREA GAMES... State is next! HELD DISNEY SPORTS?? I know in Orlando!!! I will keep you posted. They draw from a hat all those who got 1st place. It has been a long day. We have Ayden, when Michelle stopped in to watch them bowl Ayden wanted to stay. He thought all the hoopla was about him, performing baby style peek a boo and all the little facial expressions to get everyone cooing while the bowling alley clapped and screamed (not at Ayden) but their bowlers...LOL He continued to believe it was all about him.

HUMOR, part of every day life.

I thought the day was going well when I was able to take all the furniture out of the TV room polish the floor, wash the leather furniture and soak the wood with oil.. then put everything back in a new place so it made the room look fresh. I have no idea where the energy came from although the IEP paperwork is now behind.

I had Jessica today to teach her more about sounding out words so she can read. You know this is bitter/sweet for an advocate to be a part of.

I get a call from Stevens teacher who would like to just send home the "draft" IEP for me to review, we tweak over the Internet and phone and call it an annual and meet in the spring for transition. OK, I was in the middle of the room cleaning. I will read the IEP over the weekend and be prepared for my IEP meeting. SO then I get a call from Tressa's Principle, He needs to let me know that she had a tantrum and broke her glasses on purpose by throwing the down and stepping on them. HER FLEXON ones that he doesn't believe are real flexon. SO I will take those back to Lenscrafters because they are not only flexon but NIKE strong... So Tressa arrives home and gives me her side. This after the Bus driver telling me Jordan did not sit in his harness the ride home and loud says, "you know she is wonderful, I never have any problems out of her"; "TRESSA" you know little sweet Tressa who smashed her expensive glasses for the SECOND time this year into the ground. So here is the Tressa story. She said she was done with her lunch and a child forgot or didn't drink or who knows what..a box of milk was with in arms reach. WELL,,,, anyone who knows PWS knows where this went. YEP, she drank it, well tried and the Para interviened/ tossed it into the garbage can. Now I know many of you think Oh thank goodness. But anyone with experience with PWS would say; STOP and access..DO NOT SET HER OFF... So me, I would have thought; "IF" it were full she has 120 extra calories we need to alter the rest of her day... I would have made a mommy face and said Oh shoot Tressa I didn't count those calories on your list for today.. can we see how many we need to add. So she knows, SHE KNOWS, OH SHE KNOWS, she was not suppose to drink that milk. By playing the power person she has to react..IT IS HER DISABILITY GUYS!!!! so now the consequence.. She got time with Mr. Vilardi in time out, she got to/ or watched some one put her glasses in four pieces into a baggie and who knows what she gets from it all... This is the second time this year. (four weeks) Her glasses run $225.00 to $280.00 a pair. So you think it stops there right....no not about this subject.

At our house; Michelle has her friend from Texas to her apartment for the BIRTHDAY WEEKEND so I have her 3 kids while she runs to the airport, they are playing in the pool with all the kids except Tressa, Tressa is feeling a little sad, she needs to earn the money to buy new glasses so she is helping mom clean the bathroom, sweep the dirt off the front porch and who knows what else I can think of. She has NEVER broken her glasses at home, I need to get the message across it is a lot of money and HARD WORK to get them.

So here is the kick in the teeth. With Tressa working, dinner simmering (I made it early) I decide to post on PWS support group yahoo site about the event so that I did not vent on my close friends here on Friday night. I write it, read it, thought about it and sent it.. I do not usually post with PWS because it hasn't been a support for our family like many other groups I belong to. They sensor posts and when Tressa was young and I needed real help I didnt find it in the PWS groups. I went to National and FL the first years and if you know or follow our family it hasn't been all positive. This years PWS Fl chapter was wonderful. The President is WONDERFUL to us and now the new families are so supportive. I am not sure if the past was from being an adoptive parent or the open adoption=who knows or cares.. that seems to be behind me. The National has a new Director and he seemed very friendly and warm.. One day at a time. So I vent on my local friends and they just deal with it! LOL

Then I get an email a couple hours later to ask me if I would re post because I didn't put my name on the bottom of the post... NOW HOW MANY TRESSA'S do you know... I emailed a critic response as to why I never post and it wouldn't help me now as I vented.. it is over and now I get to vent about me venting and not being able to have my venting heard...LOL HUMOR I live by it!

Another weather friendly morning

Humidity is up a little more although the temp is down so feels great. I have a friend going to Chicago this weekend, I am jealous. LOL

The morning went smooth, all but the middle school girls out and on their way to school. Kaitlyn is staying home again because she can not see without her glasses and going to school is senseless. We can do things at home which I have in large print or on CD. She is in the program RFB&D which is for the blind and dyslexic,a service that provides books on tape so her AR books can be read, then listen to for comprehension. It is also open to text books. I am looking forward to the school having Kursweil for her text books although it seems to be taking a long time to get that into place. A new program, classroom suites, is looking good as well. I need to regroup for middle school this is new territory for me and not feeling like we are being successful. Kaitlyn has lost a ton of skills since school ended last June. Her spirit is not into it either.

Coffee is on, a friend is stopping by for some catching up time, his parent is going into surgery today and back in town for support to his Mother. I plan to work on IEP prep paperwork today for Steven. BOWLING tournament tomorrow!!! It is Friday so having everything caught up with the house as well.

Bi Focals 101 training/ Lucas says his first word

Ok, I am having a hard time adjusting to wearing glasses. Getting old isn't for the faint/weak someone said. My chin is in the air as I type so I can see. I will adjust they said. My eyes will train my brain...be careful of curbs was their advice. well I will be happy when this is all in place. lol

The day was sweet. I had a rough beginning by going to a Doctor visit and their office moved without notice and when I got there they said they no longer needed to see him. He is doing SO WELL. My goodness a phone call would have been nice. You always know something is up when they are falling over themselves paying you compliments. Ok, cut to the point I have been waiting over an hour.

While we were on that side of the city we stopped to pick up Ayden to come over and play for the day. Michelle was happy to have the day to herself. We went on to get some crafts and treats before heading home. Everyone loves when Ayden comes over to play. Kaitlyn got her new glasses ordered, we checked on Tressa's which should be in next week. Kaitlyn has single vision lenses and Tressa has corrective ones which take longer. The kids had dinner, pepper chicken stir fry over rice, which was a tad bit spicy for them. Lucas ate with out it going through the processor. baby steps. Hit the bath tub doing home work after bath since we had play time after buses. Lucas was being filmed for a speech video tonight so we had to get the house quiet for filming. The school district is training and Lucas is their "student" so we love helping out. He made many sounds and said the word "BALL" His very first word, we have heard and understood. It is on the video. He received a new Tricycle today for volunteering to work with the team.

YIIPPPEEEE 71 degrees; 68 w/WC factor

Wow! I never thought Id wake up wanting to rake leaves!!! Some one send us a box of changing colored leaves I can put in the corner of the entry way...LOL

My kids think I am so funny when I wake up and open the house so we get that fast cross breeze front to back as our house sits perfect front to the east (perfect morning sun) back to the west (beautiful back porch sunsets). When we open the front and back of the house up it is like having large fans blowing threw on a windy day; LIKE TODAY!

We planted a smaller raised bed with cherry tomato plants this morning, we have many more veggies to do, but it just seemed perfect to start this morning. The kids helped, they will watch them grow, pick/clean and prepare them on our salad. We have lots seeds to plant in some raised large beds on the side of the house..I am making, I just need motivated. Any locals want to help speak up.... picking time you will not regret fresh veggies.

So I am off to brew coffee and enjoy this weather as I have a run around day today.

Pray for our country, the greed needs to end and everyone needs to open their heart to humanity.

Out of the mouths of babes

The day was filled/busy with Jessica over for some reading lessons and the usual pile of laundry. The dryer wasn't working properly until I unhooked the vent to allow air flow. I need to get the duct cleaned again. So much laundry goes on here annual might not be often enough.

The kids got into the pool and played outside early because rain was coming. They love the outdoors. I had made a huge pot of spaghetti that simmered on the stove so I could be with the kids in the sunshine. The buses come and speech starts, as the night fills with home work, baths and routine.

Carmelo is my grandson, he speaks English and Spanish fuiently and is here 2 or 3 days a week with my daughter. He has taken Jordan as his mentor. Mandie shakes her head every day at all the things he mimics from Jordan and she wishes it to be another he is mimicking other than Jordan. He dances in circles, he carries Pringle's chips by the can, he walks behind Jordan yelling STEVE-STEVE, and the little echo Steve-Steve. All the little things.

Tressa told me several times she did not have home work. "I DID IT AT SCHOOL" she said. (not my first) I told her it is called HOME WORK so let me make some extra... low and behold there was a paper to do in her bag, next to a report that was about today's behavior.. she had a rough day. She knows that means her television in her room is off... her pink Hello kity television with the DISNEY channel on it... so I ask her Why would you throw down your lunch bag/refuse to pick it up then spit on the hall way floor at school??? She said she was being sassy today because she is Sharpea..... you know the sassy Blondie in High School Musical... so not to laugh I used that moment to go unplug the television. Gosh how do you keep a straight face.... I explained I would be calling the school and the next time she refuses to pick up her lunch they will walk on and she will have no lunch.. That did not sit well with Tressa. She said she won't. Spiting is gross so she knew that was totally not acceptable. No television. The tears pour (again, not the first)

coffee break, blonde and sweet

I have a few things brewing.. a couple of articles sent to me about DS issues. One a family in Erie PA that has not given their son with DS direction like any parent should any child. It is so important for parents to forget their child has Down syndrome because too many places in our lives we will have it thrown in our face.. I never care about reports that spell out what my child can not do.. I want to hear where my child is today and what we hope to gain next.. Lets look at the bright side of life. I would hate to have a list of all the things I can not do in my face every time I went to a meeting nor would I ever want to discuss my medical background related to my name. Hysterectomy Mom, Mary. Yeah I love it...NOT.

So I replied to a couple newspapers asking them to write follow up stories to show America what our kids CAN DO. A good NIKE commercial related to DS...

I would love a blog of everything I would want the next president to know about raising kids with disabilities. The truth on all sides. I can see many sides being the adoptive parent I do not have the inner guilt I hear from some parents. Being a past government employee I know the budget(truth and fiction) issues and in social services I got first hand insight on some people who just use the system and never make effort to be independent. I am surrounded by hard advocates wanting total independence for their children and some who are not on the front lines, for many reasons. I am a people watcher so this is all like me being a sponge of information. I then am able to access where it is I want to go with my own children.

The other HOT TOPIC is Mrs. Palin and what she can do to help our children get total positive awareness for a brighter future... I am thrilled about the social media awareness she has brought out. PODS POWER MOM! for those not aware..PODS is Parents of Down Syndrome. No, not people first language, because developed prior to that social change. Another HOT TOPIC

PIZZA MAN GAME

Each morning we play this game. It is Jordan and Tressa playing the role of pizza delivery people. We have to have everything done, ready to go with book bags and all at the door. So this morning we had the time. The two step outside the door to have me call in an order. I called in for a large thin crust mushroom, gr pepper and onion pizza with extra cheese. Tressa says she doesn't have any mushrooms today so I say then Gr p/onion only, she says they do not have any gr peppers and onions. I then say; ok, I will take ham and pineapple pizza, no they do not have any ham or pineapple today, so I ask for what ever special they have i will take. She said they have CHEESE pizzas. So I order a cheese pizza and a cold drink. Jordan want to bring soup because Lucas is now up with us so he can not eat pizza yet. Then the doorbell rings.... I say "who is it" They respond Pizza Hut. This is all about slowing down their speech, making sure they use all the sounds and now we head into math. They both come in and pretend pass out the food and drinks. I ask them how much do I owe them and they say, 7.00 for the pizza a dollar for my drink and 5.00 for soup. so we add it up. 13.00 so I tell them I have a 10.00 dollar bill. Tressa quickly says that is not enough and Jordan is the "OK, that's alright" pizza man. I tell them I will write a check and so we need to add a tip.... they love the tip part, Tressa would like a 100.00 tip and Jordan is always 5.00. Beings they are in 1st grade I am waiting for the 20% figures for later although I tell them when it is not enough or too much and suggest and amount. Jordan seems concerned that Lucas isn't eating his soup. Lucas thinks we have all lost our minds because he sees no food and we are not at the table and it just seems really odd to him...LOL Prior to this he just laid on the couch and slept through pizza man game. BUS! so we all run to get on the bus and buckle in. I board each morning with the kids to be sure they are gently put into their seats with with harnesses all fastened and their activity in their hands to keep them busy for the ride to school. This helps start the morning off calm and has made a huge difference for their entire day.
Back in the house to get Steven up, then Keirsten and finally Kaitlyn over the next couple hours. My new BI FOCALS are in so I will be going to pick those up this morning.

The kids are asleep, home work done, clothes set out, and my time. I have a friend who sings locally. She sings all the good female power feel good to be a woman songs. She is back at Leaping Lizards on Tuesday nights every other week. Kristin is talented. We share the Mom bond as she has a son with Autism who tends to give her a struggle some days. LL is a place I go when I just want a safe place to have some adult conversation with no pressure. JoJo has a brand new son.... An older parent (50) showing his photo and explaining how fun it is to have "more time" this go around, older in life to have a baby to raise.

Kristin, I won't get down there tonight although is in my thoughts for a wonderful welcome back to the neighborhood friends.

The attorney has made contact and we made leaps to getting the paperwork in order to finalize Lucas' adoption. I will be pleased to have it completed. I hope to have him complete the necessary paperwork next to get Steven legally adopted or at the very least his last name to match the rest of the family.

Fall is on the way

My favorite time of year, FALL, yesterday they said 11:44 AM actual fall began. Being in Florida the "mental" picture of orange, red, yellow and brown leaves start to fill my vision. I picked up artificial foliage to put out around the house. It is like a new generation of visuals for my Florida children. I hear fall and think fall seasons changing. They see me put up decorations and they begin to plan their Halloween costumes...
Keirstens is near complete (Gothic fairy) Kaitlyn is still undecided, Steven will most likely be GHOSTBUSTER AGAIN... a very cool costume I bought a couple years ago that he wants to wear every year. Jordan is set with a classic Capt. Hook Disney costume, Tressa wants to be a police officer??? I have no idea why?? Our new little guy, Lucas Tibor, is wearing Peter Pan. The party is always at our home as we live i a well established neighborhood where we know most of our neighbors so can walk and visit everyone. A few classics in the neighborhood are haunted houses/garages which are sensitive to the kids. They love this one house they can put their hands into a bowl of eye balls (boiled eggs-pickled) We have the music playing at our house, some decorating the front door area although the inside of the house is full of fall decorations the kids make... It is our HUGE Birthday . We have those being planned as well..

It is going to be a productive closet day.. Meaning, I will sort my "stuff" and get a large garbage can filled and out to the trash of papers I have needed to go through. I am on a mission to build a wall of wooded shelves to get my reference materials and support materials to teach the kids in one area of the house which will be appealing to the eye, not look like junk. I am hoping to have two computer work stations for the therapists to have an area to be with the kids not in the center of the chaos. I have resource books, manuals and journals for about every subject one could think of relating to disabilities.

I do a lot of teaching at home and often ask myself why I do not home school although the time they share with peers in school is valuable in my opinion. Just as valuable as their academics. They have never shown a dislike to school and actually up until this year I have felt it was the power behind them to have such HIGH SELF ESTEEM. Now this is the first year I see it leaving my sweet strong Kaitlyn. Her fire isn't there, her confidence is gone and the sparkle is not shining as it always did. I have to figure out if this is a temporary blow or if I need to re-think her path for middle school. I know middle school is not a pleasant place for the typical child. I so remember all the peer bashing/BULLIES those years. I do not see the choice school option being a good fit for middle school age because their solid friendship bonds are torn apart this year from a system suppose to be educating our kids. If educating doesn't include dealing with ALL ASPECTS of our environment I am not sure our future generation will have good coping skills. You see many schools are placing kids by their scores from FCAT. So grouping people is the norm at a young age. ore we preparing these children to be out in the REAL WORLD where they have to work with a co worker that may not have the same IQ as them,does it spread the gap further for our country to be divided by ability? It concerns me that Kaitlyn can not be in a classroom with her BFF because she isn't the same score level on a reading test or math test as her BFF... Does that mean our teacher are no longer capable of teaching across the broad range? Isn't it shown in many research studies that grouping like this is NOT in the best interest for all students?

It was a low key day. Actually able to stay in my PJ's all day!!! Woke up late, made breakfast for the kids who were happy to see Mom. Nancy slept in as she does when she stops over. Her "suite" aka Keirsten's room is dark and cool with a new pillow top mattress which she is alone to enjoy. So no need to hurry the night of quality sleep. We played in the pool, looked through the Friday folders and cleaned out book bags. Watched the BEARS game with some cheer leading stunts couch side to keep things exciting...DA BEARS (yes, I know we lost)LOL It's all about spirit! The kids are ready for school tomorrow. We had a seafood dinner which was flawless. The evening quiet with lots of cuddles, bath, stories and in the blanket show early. They were all asleep by 8. A close friend, ex boyfriend from 1991-1997 is in town for a few days, so possibly will stop by to say Hi tonight since it is raining. We have a straining friendship at times which can become draining for me. Being the person I am, it is difficult for me to always be "on" when I exceed myself for others for a period of time. I have a few friends in stressful relationships who have shared their stories the past couple weeks...Asking my opinion---the one friend who has had the least and most unsuccessful relationships of anyone I know..LOL.. It some days seems that I AM the one with the..... BEST LIFE..... I am my best/worst analyst for helping myself choose relationships and keep balanced. The next couple of days I have set for time with my kids and grand kids. It is where I feel all my comfort right now. Dating as all would assume is going to happen when the right person crosses the right path on that right day and the right time..4 me.. needless to say, might be awhile. Maybe one post will be placed here about my point of view on a "soul mate" LOL makes me smile just thinking about sharing that here....I better get off the computer and read a book.

WWW.DSADVOCATE.COM

This website is a way to get informed.

Mary & Nancy co-present on Supports/services

GAINESVILLE FRIDAY NIGHT/SATURDAY

We arrived in Gainesville about 7:30 / 8pm, went to the hotel to unload and re-group to present in the morning. A couple families were still hanging around the pizza party area so it was nice to visit with some people we only know from the Internet. A FACE! ;0)

So after we got everything in our room we went back to the conference area to see if the board meeting was completed to possibly meet up with Michelle (President) for details on when we will be speaking and where. We found the little bar and grill with some folks in it and planted ourselves to see if anyone would drop in. Many non pws traveling people were in watching the game and took in the information we were discussing about the conference. Nancy and I met a couple of people who were interested in learning about PWS and were very pleasant to spend time with. The guys were supportive, one actually called to leave fundraising information on my cell phone. Roger might possibly help with a antique car/motorcycle club fundraiser. What wonderful people in this world. An interesting conversation sparked when the TV on the other side of the rooms volume went up regarding the upcoming elections.....

We closed the place down at about midnight, Tressa had such a wonderful time with the bartender, so cute. She asked that the women babysit her baby while she went to work (Tressa) The women "MANDY" answered the hotel phone and Tressa FIRED her from babysitting and told her should should not talk on the telephone while she should be babysitting her baby. Kaitlyn played the video games the entire night. The cook made an error on an order so they took fries and chicken to Kaitlyn and got Tressa up to the bar with diet coke and a cherry. Tressa is so into a conversation with Mandy, telling her her life story. We were having a great time with a small amount o new found "friends" for the moment. EDUCATION about PWS at a high.

Saturday morning

Tressa wakes me before 5 am saying she wants breakfast. I get her back into bed and again at 7 am she wakes me saying she had a bad dream and didn't sleep well. Nancy wakes and says Tressa was in her room (joining rooms) during the night. We get ready to get to the conference doing our hair and makeup. Tressa has to wash her face, something was on it. Nancy checks her tums but all there.

We head to the conference after a 1/2 hour searching for Kaitlyn's glasses with no luck. The kids go into their groups with peers and Nancy and I run to grab coffee and a bite to eat. The conference is starting and Adele is here.. So wonderful to see her. She is an adult with PWS who taught me so much the first year I had Tressa. Tressa is loosing it because the hotel doesn't have cereal. She has to have cereal every morning. ROUTINE.

We get her calm, get into the opening speaker. I have a feeling of warmth. A feeling of belonging that I haven't always felt in this group. I can not explain why but this was all feeling wonderful. Many of the new families are here and they are so welcoming. Michelle is an amazing person.

Tressa wets her pants just before noon and I scramble to find a change of clothes. She now has lost her classes, we search for them and can not locate them.....TWO PAIR of glasses... Kaitlyn and Tressa ..

Lunch is served and now it is time for Nancy and I to present. I am feeling good as is Nancy. We present about 2 hours on IEP and school communications and supports. DOE/APD/Special Olympics/FBA/PIP/Family Care Council/ESE Advisory/Etc... We had some very hungry families needing information who were attentive.

I remember I need to give Tressa her antibiotic for her ear ache and When I open the bottle THEY ARE GONE!!!! Tressa admits that during the night she ate them. (THUS THE STUFF ON HER FACE WE THOUGHT WAS TUMS) Oh my goodness. Dr. Driscoll has gone and now we search for another medical professional... The 400mg chewable tabs smell like candy..I didn't think, I didn't think!!!!! I call poison control and we discuss her weight, the time that has passed and the amount... At first it said 40 pills so we figured she ate 32. It puts the toxic level to go to ER. then I remember the pharmacy put the order into two bottles so only 20 in search and she had a days worth and then 2. So, she ate 14. this brings the levels to a watch. She is acting usual, is having diarrhea which they said would be normal and a belly ache although she isn't saying she has one, I am not sure she would. Her urine is suppose to smell musty.... so I go back to her morning clothes... Pee smells musty???? I am no smell detector but smelled like urine and not smelling musty???? She rinks water all afternoon, no problems other than lots of bathroom breaks.

The day finished with some prizes for the kids and lots of hugs of support. I plan to get more involved with this group over the next year. We went back to find Tressa's glasses although Kaitlyn's never showed up. We stopped for a bite to eat and fill up and head home. Jordan is calling crying for Mom to get home. We drive straight on and arrive in my drive way after a short sop in the Tampa area to pick up Birthday gift bags for Kaitlyn's MAKE UP Birthday Party by MaryKay which is Oct 4th.
Jordan was asleep although gae a cute smile when I kissed his cheek. Lucas had held out as long as he could for us although was sleeping now. MIDNIGHT. we unpack necessary items and head for bed. The entire way home we recapped our first co-presenting experience and plan to do many many more as helping families learn how to use their DOE materials to educate themselves with ease.

THURSDAY AND FRIDAY make up bloging

Friday

I am up getting kids not going to Gainesville with me on the bus, and the phone call at 7:30 for sick visits to get an appointment this morning for Tressa. I am in for the Doc at 9:15am. Nancy is leaving Ft Lauderdale to come this way about 11 am...so lets say noonish..(she is consistantly late) This will get her here before Jordan gets home on the bus. An important plan to keep. The Doctors appointment discovers a right ear infection so they emailed to Walgreen's and we head home to finish packing. Mandie arrives about noon and I decide to call Nancy about 1ish.. SHE HAS NOT LEFT YET!! So Nancy time. She helped at her daughters school for photo morning and had last minute business cards to print and other last minute things people do before the speak at a conference...(usually the day or two before) So about 2 or so she is on her way/ Jordan is do to be home about 3 so I decide to run my Monday morning errands to return library books, drop off BUDDY WALK flyer's and go out to CMS for paperwork needing to be turned in. During my errands Nancy arrives to Ft Myers so we meet at I-75 and hop right back on the path to Gainesvelle. (Prader-Willi Conference) Nancy and I are speakers tomorrow and we are not informed much about the conference for MANY reasons mainly being people with ADD.

The ride was flawless, we went up in her comfy car, she drove and we got to visit many hours without holding a phone.






THURSDAY

I have made one promise to myself for this day...CLEAN OUT THE KIDS ACTIVITY CLOSET!
If you go back several photos you will see the activity closet after I put shelving units into it (front hall closet in the main part of the house) Well during th summer months it was USED USED USED which is what it is for. I just need to pull everything out once or twice a year and replenish sort, and put everything back into it's place. 3 photos tell the story i stated at 7am and completed at 1pm; success!

The kids were up a little easier and the day went smooth. Tressa is having ear pain so a trip to the Doctor in the morning before leaving to Gainesville. Kaitlyn is excited to be going to a "HOTEL" She is my hotel junkie as I call it. She would love to go every weekend and a day or two during the week.

We lost electrict for a split second this afternoon and I could not get cable internet back on line..... the TV went on right away and the phone was on but on line wasn't cooperating?????? I do not do well with electronic blunders..

Mid week hump

This morning was a bit more difficult to get the kids moving. Well, all but Tressa who is up before the chickens. Their bedtime is 8 pm, I can not see it moving any earlier and us getting all the therapy, home work, bath, bed and family time into that block of the day... WOW.. might just be mid week slow down and tomorrow will be a new.

I was so excited to finally get medical insurance, boy is some of it a joke.
I go to the dentist; all well and good, one seeminly small issue with one tooth after what has been 7 years since I have had insurance.. well they DON'T COVER that particular proceedure so this needs to go into surgical, then the two choices for follow up are $2,500.00 or $3,000.00 and that is WITH DISCOUNTS. I am amazed. Remember, I said yesterday I have been living in my sheltered world for several years...anything I want for the kids I can advocate and get.. I had no idea, I might have it harder for me. So I am taking some time to make decisions on the tooth... Cleaning is done!

The eye glasses were covered,I have the bifocal line but I can deal with that other than paying $540.00 for a pair of glasses. I can have a line and learn to deal with.... WHY DID I FIGHT SO HARD TO GET ON INSURANCE?

Ok, so it is house keep up time and I am here so I need to get out there and house keep...turning the music up so I can dust/sweep/mop/make beds/laundry and start dnner and dance... "My therapy" before the buses roll in. I just wasted 9 am till now 1pm getting told my efforts to get health insurance really mean nothing...

I need a nice man who wants to take care of me and let me take care of the kids...LOL LOL LOL

My hump....my hump....myhump myhump myhump!LOL Wednesday HUMP DAY! Got ta'luv life!

Prader-Willi syndrome

Have you read up on it? Amazing disability and reading about it doesn't even begin to explain living with this..

EXAMPLE: I sat to type the pat post while they all sat at the table. Tressa has a worksheet. I am less than 10 feet from her full view. She some how figured out in the moments she was home that Kaitlyn left food in the bathroom loading her snck this morning. Kaitlyn takes a mid morning snack and doesn't get her bus until 8:45 am. Tressa leaves at 6:30am... a box with 7 breakfast bars 160 calories each so times 7 HAD SHE GOTTEN TO EAT THEM.. I get backto the table, Tressa has her paper done sloppy but completed. SHe asks if she can do the rest when Vickie comes which is a normal thing... She goes in her room to change and slowly shuts the door to a full close QUIETLY... not such a normal thing. So I slowly open the door to find her unloading the goods (breakfast bars) from under her clothes....... on to er bed.. WIth very wide eyes she says "SORRY MOM" I take them to the kitchensee the box on the bathroom counter to the girls bathrom and help her get into her swim suit and she is swimming. PWS I can not look away for a second....

BBBUUUUUSSSES

Moving to the music...
Up very loud

1. Take You ThereSean Kingston
2. No OneAlicia Keys
3. Burnin' UpJonas Brothers
4. This Is How We Do ItMontell Jordan
5. Fall For YouSecondhand Serenade
6. In The AyerFlo Rida /Will I. Am
7. MIA

So funny Steven got right on his home work. Got through it and started dancing with me.... Maybe we have something here???? No strugging and slumping and Uh's ////

The little ones bus is here and we might freak Lucas out.. Kids' CD going on; Jordan hopes right into the crcle dance- All of you who know Jordan have the visual. How he doesn't get dizzy is beyond me.

Music down and home work then pool. Looks like rain is on it's way o e need to get moving. Dinner is on, barbie and Vickie will be here so off to the pool.

FAITH- I need to vent.

Most people would not say that Ms Pringle is a spiritual person (outwardly) as it is a private piece of my life although my life work is very much driven by my faith/ my higher power. For me personally being raised in a strict Catholic family, attended Catholic school and made my sacraments faithfully, I hold dear my upbringing for balance. Today with our economy in such distress, especially the corner of the world in which we live, I find myself pulling from my faith more each day. Families forced to let go of their homes/dream and moving, others doing the unthinkable to hold on. Mothers giving their children to others for financial reasons, simply; people hurting all around us. My personal shortfall of being co dependant is at it's highest test in keeping my balance. Friends making bad choices, placing their lives and families lives in jeopardy, another calls crying all in one afternoon. How does one get so far from their balance to be in such a place. I often wonder how sheltered I am in my own world with my children as my focus. My days focused on the loving smiles I get to view on their little faces each day. I focus on what I have, not what I do not have.

I pray today for all my friends and neighbors to find strength within themselves to pull faith in their lives.

I loved the words across television this morning about our country and the need for greed ruining our country. I didn't think anyone would ever put their mouth where our country is. About six or seven years ago when Nemours clinic left our area is when I vocalized disheartening in our economy. That the Doctors who could save my children's lives could not stay in my area because they couldn't afford the rate of liability insurance to balance their budgets....yet "ER" was the hot television show and the actors made more money than all the specialists put together to save my children's lives... How can that be? What were we thinking?

Another year older, not feelin wiser

It was the usual morning which went off without a hitch. Kids at school and the long needed trip to Wal-Mart. The kids support coordinator stopped by for about an hour to inform me about the new tier cuts and to let me know our family will not be loosing any supports or services. Off to shopping, I knew it was the BIG ONE so I shopped the inside isles for the first trip. A load of laundry in, dish washer is running and it is 10 am.. mental notes now for shopping(dry goods/household items) $241.67 for 162 items- ouch! The looks as I re-enter the store with an empty basket and start shopping AGAIN, now for the cold and frozen items and those few middle items I wasn't able to balance on the last cart.
This basket loaded and falling over although 98 items and $260.09 with out shrimp or lobster...LOL Like we shop those isles. I did forget a small list of items but it is 1244 and I need to get home and all these items put away before the kids start pulling in.

Kory's friend Steve has called me about a dozen times to catch a ride to North Cape and doesn't seem to believe I really have been in Wal Mart shopping three hours. LOL

Steven rolls in as I get a call to go get Kory from a broken down van. So we wait for all the little guys to come home and run into Ft Myers and back before Kaitlyns bus comes. Home work is a little behind and dinner is variety tonight. EVERYONE IS HAPPY. We have speech therapy tonight and quick run to the pharmacy for Jordan's medication. Tomorrow is spaghetti dinner at school.. (mental note) Baths bedtime routine and they are falling asleep easy tonight other than Miss Keirsten who is sneaking the phone to the back yard... TEENAGERS they are so fun, like we were never teenagers-go figure.

My night is stessing over Kaitlyn's middle school placement and how it is really going. Her mood, spirit is tarnished and her love for school fading. Her school papers have scribbles (sign of frustration) and many drawings that are not school lessons. I need to get over to her school for a good observation of her day. SHe is writing about weekends and loving mom and she use to only talk about shool and her paras over at Ele School. I love being loved but it was a great feeling knowing my children were ALL in the care of those who love and care for them. I SURE MISS SKYLINE when thinking about Kaitlyn.

My singles site is heating up and making life a little interesting. I am very critical of on line contacts knowing people turn out to be so different than they preceive themselves to be. I can not believe people lie on purpose... no one would do that right???

End of day 17,529 alive

My day was sweet lived along side my children. We stayed close to home other than a short trip to purchase a Birthday cake which ended up being a big cookie...I assured them one candle was fine, missing 28 is OK!! Tressa made sure she knew my age to TELL EVERYONE tomorrow so 29 is the answer. Ha Ha Mandie who coached her to answer OLD, VERY VERY OLD, when anyone asked how old Mom is. The kids seem to be passing the bug quickly. They are keeping up with good food, vitamins and lots of fluids. Tressa complained about her ear, Kaitlyn has a headache and Keirsten claimed to continue to have stomach issues (she chose to go get the treats...hhmmm) Steven had some diarrhea and Jordan has gas.. Boys what is it with that????

The evening rolled in some noisy thunder, lightening and a short stint without electric. This is always a lead into snuggle time on moms bed. We talk about all the angels in heaven bowling and how much noise they are making. The kids all questioned if school was tomorrow and the need to get the umbrella by the front door because it is raining. You know they are tired when they start crying because the van is getting wet...lol They are all sound asleep and I am heading to the jacuzzi to relax and refresh. HAPPY BIRTHDAY TO ME...

NOT such a HAPPY day after all

As the hours have passed the fevers are coming and sour tummies and yes-- vomiting has begun.....So the days plans are changed and I may be able to spend more time on line with you all.... They are dropping one at a time.. Kaitlyn was yesterday after Carmelo had it the day before and Michelle's household the beginning of the week. The good news is it is not a long lasting bug. Oppps Mandie just called to warn me she is down.... LOL not such shocking news here. Well off to check on everyone and I am taking vitamins by the handfuls!

HAPPY BIRTHDAY MOM/GRANDMA

A breakfast made with lots of love. Phone calls from Ayden/Michelle--then Mandie and Family. Kory stayed over to babysit so I could go out for my birthday last night and the house is buzzing about everyone to keep secrets... SSShhhhh Tressa was up at about 5am letting me know she is taking me with EVERY BODY bowling today in my NEW clothes.....lol But it is OK we all keep secrets well around here...NOT!

Saturday was moving day for Big sister

Michelle moved into a larger place, boy was she appreciative to having multiple siblings... A trail of little helpers moving boxes/pictures/bags and stuff from one apartment down the stairs across the parking lot up a flight of stairs and into her new place. She was thrilled to get so much done is such a short amount of time.. The kids all feel a part of her apartment because they have their "girls" or "boys" night out at MICHELLE'S house on the weekends ordering take out and movie of their choice.

Bowling proved to be another winner day!!! Katie and Steven will play in the AREA GAMES the end of the month Sept. 27th competing against 500 other athletes.

A family night of games, dinner, more games--- everyone choriographed a dance to music and we all have to learn their dance.... JORDAN always chooses breakdance moves and it is getting more and more difficult to drop and swirl spin and jump like he does....lol and some moon light swimming.

Sam's Club Clearence

The pool is at Sam's Club on clearence--- was $500.00 and now $200.00 came with ladder (the one in pic is old one, new one not put together yet) solar cover and elec. filter/ extra filters and a surface skimmer... A GREAT DEAL! 18Ft cir. 4ft high. Took less than an hour to put up and a day to fill.

Who is the extra child in the pool?????

Jessica is in the pool with the children. About six years ago I was contacted to see if I could take custody (disruption) I learned that an Aunt lived in my neighborhood so I talked to the Aunt and together we put a plan in place for me to be the "respite" person so the Aunt could take this child in and still manage her job and marriage. The uncle wasn't all for the new responsibility although with the support he agreed and Jessica went to live with Aunt Connie. Aunt Connie needed Jessica to stay in our home Thurs to Sunday each week so she could keep her waitress job. So we kinda had joint custody...lol I gave them the information to get on the DD waiver and helped enroll them, got them connected to the local supports and services. We did this arrangement for a little over a year or two... who remembers... then Uncle Jackie saw his role and the impact a positive male role model makes on a growing young girl. I started watching less, Connie moved jobs and Jessica settled into her family. I continue to provide support and respite has gone to a day or two a month. She is now on the waiver for support. Jessica being 17 is looking at transition to Adult and again we find ourselves planning. Aunt Connie has become extended family and Jessica very much connected to solid family values which taught her about love.

Give thanks to our great teachers...GOLDEN APPLE AWARDS.

Dear Dr. Brunick and Dr. Browder

I am seeking clarification on how the Golden apple is measured; by nominations (numbers)?

If it is by nominations it seems slighted that a teacher like Ms. Kimberly Cross, who by the way is AMAZING, would never seem likely to get on this prestigious awards list. Maybe some honorable mentions.. She is a special teacher with qualities only moms like me understand. You see she makes systemic changes that no one sees as 'her' doing? My son is a prime example of her ABILITY to change the future of a school and a district who will deal with my son for his educational lifetime. Ms Cross took a student who would elope a classroom up to 27 times a day, would spit, kick, hit, pinch and terrorize a classroom... not your shining gen ed student. I want him in Gen Ed.. I called a meeting, selected with the help of personal at Skyline, Ms. Kimberly Cross to help.. SHE HAD NO IDEA WHAT SHE WAS INVITED FOR. She had never taught a developmentally challenged child, she didn't flinch when I asked her to 'try.' With behaviors so out of control it seemed to be the focus, she is specialized in SB. You see my son is a visual learner and over his time in elementary school several blunders happened which feed into his behaviors going from bad to worse. The schools were being taxed with the influx of students and not enough schools, not enough classrooms and not near enough staff $$$$. He learned in the first weeks of Pre-K escaping the room meant time on the playground until someone noticed or could get back up to get him... He learned all kinds of attention getting techniques... and being a visual learner he was in classrooms full of the most talented misconduct students and teachers who were dumping grounds due to the overwhelmed system.

So with that visual one can get a good idea what a handful my son was at school and home. I would never give up... Ms Cross met my passion within my son and had the same vision. She saw his ABILITIES and had not one reserve in taking on the journey. She used many methods to find the match/fix... she had his eloping squashed within a week and from there has worked diligently for a year and a half to have him sitting successfully in a first grade classroom with his peers this year being as amazing as her works shows through him... SOMETHING I WASN'T SURE WOULD REALLY HAPPEN... My heart has so much appreciation for what she has done; not to provide a quality classroom/course for learning for a year in the life of a child but the ability to teach my child a lifetime of skills which will allow him a better 'life' because of her teaching him to be a quality person... She saw a boy with abilities untapped and she sparked those abilities for him to grow... A golden apple doesn't seen enough..She deserves the tree because that is what she provided for him... the fruits of being able to be educated in a setting among his peers... She is your true golden apple teacher if only this one mom turns in the form..You needed to know.

Mary
Jordan's mom

It's official I am aging......

So the dental went OK although the thought of putting braces back on at 48 seems odd.... and the physical/lab result shows a very healthy women BUT DARN IT!!!!! The eyes aren't holding on... From 20/20 far sided and just pick up a 1.25 reading glasses to BI FOCALS>>>>>>>>>> Yikes... no comment that my arm isn't long enough this time.. More like: YOU ARE OLD OLD OLD LADY! LOL so it is official...I am heading over the hill.... lol The cost of these glasses could cause a heart attack.. geesshhh aging.....

Off to get my grandson for lunch and an afternoon of babytalk. That will lift me.

Last night was the ESE school board advisory meeting which I am honored to be invited into. We discussed the loss of so many students in our district and how that effects all the departments. I am pleased with our administrations listening and willing to start more local town hall meetings to hear ESE parents concerns or comments. It is a go for the district to adopt the disabilities week and I asked if we could have one appointed bulletin board assigned to ESE parents visible on each school campus. We can share awareness to all school body an inform ESE parents how to connect. Communication continues to be a huge problem across the board.

The kids are doing so well in school I sent the inclusion district team to my daughters middle school because she has always been included in gen ed and for middle school we altered a part of her day but the school doesn't understand the difference to achieve the FCAT and deciding to go with alternate assessment. SO that is all positive. Kaitlyn was hanging in the school with her peers and making plans for the Friday night community dance(youth center), very normal for 13 year old girls. The team noted this in their visit to the school. It is so important for them to see that it is working.

Jordan is getting reports from his full inclusive 1st grade setting which his SB specialist is bragging about how well he is doing..knock on wood. They struggle on the issue he can not keep up with the actual 1st grade curriculum but with a little modifications he can. I sent in samples of how to.. and now they are doing it on their end. It is catching on one student at a time. He really grew up over the summer and has buckled down ready to learn.. Makes me so happy to see him make such wonderful gains.

Tressa has always been fully included although with PWS some things set her of and I am working on prevention for the school folks. Wrapping ones head around the effects of PWS is difficult. Such as yesterday when I visited campus she had just gotten into time out for not wanting to transition from social time on the playground to class. I explained to the folks if they would assure hr they can meet on the playground tomorrow or what ever day they will all be on the playground again she will plan for that and move on in her mind...I also stated they can get the girls to exchange phone numbers and we can meet at the park... they seemed willing to do that.

Steven goes to a separate school from early years behaviors and set backs. He is fully included 70% of his day and this has made great strides so his IEP I plan to get him into the school that the other children go and prepare him for middle school. He is such a different kid than Kaitlyn. Learning styles and attitude about learning so different.

Keirsten continues to ask me to put Kaitlyns school although I feel it just wouldn't be a positive move for either.... she is trying to avoid consequences since her teachers know her and how she tries to skim by.......Eighth grade is making her start facing her future.
Lucas is doing so well in his new class. His teacher has a child with DS (adult) and loves our kids so that in Pre-K is important. She is one of the most experienced as well on the campus.

So on top of that I got a HUGE surprise for the kids for the weekend.. I am going to a parent conference on Saturday so the providers will enjoy this new item. Next weekend is PWS Florida conference where I am a presenter so a few busy weekends approaching.

Now I need to finish the kids getting ont to their busses and because I was blogging Steven didn't board his bus so I will drop him off and go to my eye appointment..

If you have been following..I have been to the dentist, had my physical,all the labs done, planning the annual female visit and eyes checked today for possible glasses.........HAPPY BIRTHDAY TO ME..LOL Gosh aging is no fun!

For all my friends in Texas...my thoughts are with you and praying you all stay safe! Keep me posted over the weekend. Hugs!

A LOAF OF BREAD

I want to share this actual event that happened while driving. I am driving my 15 passenger van for a long distance trip. A good friend, Nancy experienced parent is in the front passenger seat. In the seat right behind us I have Jordan and Lucas, the seat behind them Tressa and Mariah (Nancy's daughter) the next seat is Kaitlyn and in the back seat is Steven. The two flat screen TVs are on, it is approaching time for lunch. Tressa has Prader-willi syndrome so while packing or doing ANYTHING where food is a part of our lives I have to plan, prepare, predict..... So I have the food that can be opened up near the front. Although climbing in and out for potty breaks it is not wise for a loaf of bread to be there. while I packed, I was very careful to put the loaf of bread safe and secure. We continue to drive down the road in the rain. Nancy is getting out the Peanut butter and jelly, plates, knife and all the fruit to make some lunches..We request the loaf of bread from the back. The kids all lean down to look. No one says anything. I said the loaf of bread is UNDER the seat Tressa is sitting on BEHIND the bag of pull ups, NEXT TO the pink suitcase. I hear "I got it" and Steve passes forward a sock. ???HUNH??? Oh then Kaitlyn says "Steven that's not bread" so she moves and I again say slowly UNDER the seat Tressa is sitting on BEHIND the bag of pull ups, NEXT TO the pink suitcase. They all start again. Mariah says "I see it" and she then has nothing in her hands and says I don't know. SO I said Guys.....the loaf of bread is UNDER the seat Tressa is sitting on BEHIND the bag of pull ups, NEXT TO the little pink suitcase. I have gotten to the point I just want to pull over....it is raining so hard. Nancy and I decide this is a good experiment so lets move forward... I hear someone say they are hungry. I tell them we have everything ready we just need the loaf of bread which is UNDER the seat Tressa is sitting on, BEHIND the bag of pull ups, NEXT TO the pink suitcase. I was 100% sure as I made a mental note and could see it in my mind. We continued to drive in the pouring ran down the interstate as they all seemingly tried their best to locate a loaf of bread is UNDER the seat Tressa is sitting on BEHIND the bag of pull ups, NEXT TO the little pink suitcase......45 minutes later and a van full of giggling people..... THEY FIND THE LOAF OF BREAD!!!!!UNDER the seat Tressa is sitting on, BEHIND the bag of pull ups, NEXT TO the pink suitcase.

I take a deep breath, the kids are all asleep and I have a few moments to type... The day started with a raining storming morning so the busses were running a little late and we run a tight ship... The little ones were all good with rain ponchos on and the big unbrella to walk under..the little things in life that excite them. They get on to their bus and are off, now for Steven. His bus hits it just right as the rain had given him enough time to board before picking up again. Now the girls.. The flat irons are heating the curling iron is on, their make ups and gels goops and oils.. Keirsten is ot of the shower and starting her morning routine. I will need to drive her as the rains are picking back up.. Her bus comes about five blocks away at 8:15 and Kaitlyns here at the house 8:45. We all jump int the van. Kaitlyn will finish in the van... I bring along a bowl of cereal for her...NOT SMART MOM... I hit a bump and she is wearing the bowl of cereal. YES I PUT MILK IN IT... so now I am cutting time close. I wait till 8:35 have Keirsten wait under a tree and I race Kaitlyn home to change and cath her bus.... drive quickly back to see that Keirstens bus indeed came. Ok it isn't 9 am and I am on a fasting morning for my doctor appointment blood work.... NO COFFEE.... Everyone is off to school so it is my turn. I have 3 minutes to get ready and get on my way out to the lab. I rush out to wait 1.5 hours. I always enjoy the oments where I have NOTHING to do. I love people wathing and when this tiny clinic is complaining about them being "swamped" "SO BUSY" because four people are sitting in their lobby... I coudnt believe their verson of "busy" compared to mine...lol All went well and follow ups scheduled. I need to set my annual female visits which have been more about decade visits for me.. I know I know prevention and I am almost 50. Hey let me deal with almost 50 without those appointments.

Home to get things done and prepare for therapy night, and a session with behavioral.. My email box is down to 983 unread so I am making progress. A couple families are facing some issues I help direct them today. I need to go shopping but that can wait. I have such mixed feeping about life as I do every year just before my birthday. I believe it is my way of making sure I am livig each day of my life as if it were my last. My life today is driven by someone besides myself. God has the steering wheel and I am on the ride following the road he has chosen for me. I seem to stear into the ditch at birthday times questioning his road map. So bare with me these next few days as I put life in idle.
I will sign off because there was an event I want to share called A loaf of bread.

Blogging About Trisomy 21
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Blog update......

Monday- September 8, 2008

The morning routine is in place.. Jordan and Tressa are up, dressed and on their bus with smiles at 630 am. Lucas will also ride but as of this morning no car seat so he stays home. Kaitlyn is lovin middle school, she tells me all about her new friends.. Keirsten bugs me every day to switch her to Kaitlyn’s school although I enjoy watching Kaitlyn thrive with her own space. Steven is quirt in the morning, gets himself ready and off to the Wii every chance he gets.. High School Musical. A busy day running errands and picking up a new pool for our back yard. The sale on above ground pools at this time are wonderful.. Lucas over to get a pair of new fitted shoes 8 XW with added arch support and it is a successful morning. Lunch and house keeping.. Monday is wash day, set appointments afternoon. Kaitlyn and Lucas go to the eye doctor October 10th am. Homework is going ok, Ms Vickie comes to help and Katie learns about making a graph. We graph out our stats on what is everyone’s favorite ice cream flavor. I located an old worksheet graph and copied that to send in for the school to see what I want for her to be part of the class at her ability. The paper has the words we introduced to her and what she learned.. She learned that graphs give us INFORMATION and we taught her what the word information is and what type of graph BAR graph and which shows the most, least and same… Everything is written so they know what words we used and what she learned. Ebay had over 2K clarinets so I need to figure out which brand/kind from band and get one here for her. Ii would love to get more instrument s in the house for the kids to play at their leisure.

Sunday September 7, 2008

A sleep in morning and breakfast in moms bed… fun fun. Keirsten is over at mandie’s we will meet at 2 pm in Ft Myers to get her home.


Saturday September 6th 2008-09-08

A BIG PRINGLE DAY…. Steven and Kaitlyn have made it to the COUNTY GAMES!! Bowling frenzy in our home. Tressa and Jordan struggled so they are not in the county tournament this time. I am taking the two of them out this morning to get new fitted support tennis shoes…. SSShhhhhhh they do not know. They are so excited to be going with mom all by themselves.. they are guessing what we are doing… not close! FUNNY Tressa says “Mom my toes are hurting in my shoes”….lol No, she didn’t know.
At Snyderman’s I learn Tressa’s toes were for sure hurting… She grew from a 13XW to a 1.5 XW WOW…. She had color choices so she goes into this long winded story to the salesman about her last years teacher, Ms Myers, wedding-- favorite color-- yada yada yada and he smiles… so it is purple for Ms Myers. Jordan 13.5W to a 2 W . choices were easy- red it was. Joe, the fitter since these guys were baby’s asked me what I am feeding them. With new shoes we stop at Wal Mart for some necessary items and not so necessary items and we race home.. Steven and Kaitlyn are ready o BOWL! I turn around and head to the bowling alley with Kaitlyn and Steven. Once there I learn Kaitlyn is on lane 7 and Steven on lane 24…… Our friend Brain and Katie F. are in lane 6 so I hope that helps my Kaitlyn love the competition, I wish I had put on running shoes. The tournament begins and I am running from end to end. I learn NO COACHING YOUR KIDS… uh oh… I need a drink to relax. Kaitlyn is overwhelmed and not focused… It was breaking my heart. Another mom sneaks up and helps Katie focus.. Down on lane 24 all the parents are coaching so I am right there with Steven helping him remember where his feet need to be.. STRAIGHT DOWN THE MIDDLE.. he puts it right there when he tries. THE GAMES ARE OVER… Steven gets a first place in his division and Kaitlyn gets a first in hers.. I am so proud of them. They are so proud of themselves. So they go with me to Wal Mart to pick up film and they tell EVERYONE they are winners. Mandie calls to say Jordan has ben really having a great day.. so we stop by the video section and buy Scooby Do. Home we have dinner and cuddle into watch movies while Mandie takes Keirsten home for the night.


Friday September 5, 2008-09-08

I am having a friend over who works for the school district in the parent liason postion to take back some concerns/suggestions to better meet the needs of the kids in inclusion and other best practice for children in the public education system with special needs. Danna is so into the needs of good communication and collaboration. She took the time to look through the materials I have and what can help the kids. Some issues most likely th gen ed teacher is totally unaware of. We will keep working together to educate and bring inclusive setting as the norm. The meting lasted till noon and it was time to go get Mr. Lucas from pre-K. He is doing well for never being in the formal classroom setting prior to this. He loves a couple educational toys and his classroom has them.. No napping at school.. ugh. Friday night and no youth dance. The girls want to bake Brownies and watch movies with mom. We send some time dancing to music and playing games.


Thursay September 4 2008-09-08

A busy morning and nothing seems to be going well… lucas is going to school and I thought leaving Kory in charge would be ok…WRONG… he fell asleep and Kaitlyn missed her bus and I am on EMPTY (gas in the big ole van) I have a meeting in minutes and now it is an hour of chasing my tail… I reschedule the meeting until tomorrow. Kaitlyn is upset she missed her bus.. She was playing the Wii and didn’t hear her bus.. I drive up to her school in the parent drop off line and she is excited.. I ask her if she can make it to class or if she wants me to park..”Go home Mom.” I look in my mirror as I exit the lot and she is leaning up against the pst talking to a peer.. Oh lord please direct her to her first period class..She has always entered on the other side (Bus ramp) She I growing up so fast. I called downtown to get some extra help in the inclusion department for Kaitlyns teachers to let the heat off and lighten up a bit on the subject matter. I want them to follow her IEP and some how they are mixed on the level she performs so much of the work is over my knowledge base let alone hers. I never learned Greek..

Wednesday September 3 2008-09-08
Lucas’ staffing to start school YIPEE he is lost in the house during the day and will be so happy to get to school. The meeting is in Ft Myers, he is so good to travel with and go places. He isn’t so good during long table and chair meetings…What was I thinking? We made it thorough and he has his first formal IEP.. Skyline is the school and the classroom Ms Kathy yes, they gave me what I had hoped for. I want the kids all in one school and I want experienced teachers. Off to Skyline to fill out enrollment forms, then lunch, nap and some house keeping. I do not seem to be keeping ahead of the house keeping right now.. I am going to sleep at 9pm and up at 530 am so maybe this is part of it. Moms adjusting.


Tuesday September 2nd 2008-09-08

I went to the dentist for a broken tooth. How I dislike going to the dentist. I have to come back for another appointment to have it removed and discuss what the next step is…I can hear the cash register ringing…

Gail called and we need to get out as adults … A gift certificate to Bahama Breeze is the answer. So we head south to have some girl time. It was nice to sit for a couple hours and chat about nothing, think about men and giggle. Home by 8 so my schedule isn’t thrown off for the early morning busses.

Monday September 1, 3008 NO SCHOOL

Set up the little pool, got the back yard set early for play and the grill scrubbed for some cook out today. Keirsten is big on the meat in this house and she likes hers rare.. I pull weeds and work on my garden a little. A do nothing but enjoy family and the day.


SUNDAY August 31, 2008 HIGH SCHOOL MUSICAL TODAY!!!

It is 4 am and Tressa is at my bed side asking I she can get dressed to go to High School Musical.. I inform her it is the middle of the night and she needs to climb into my bed and go back to sleep. She complies for about and hour. Up again trying to get dressed. I set her up with ome things to do at the table and encourage her to finish coloring and try to o back to sleep. Now Steven is up and the two of them are writing and coloring at the kitchen table talking about High School musical.. much of it argumentative nonsense but keeping the two of them busy. I can see them from my room. It is about 7 and I get up to make breakfast for them early and explain there will be no snack because we will eat at the musical. They want to get dressed… I explain we will dress at 11 am and show them that time on the clock. We get out some art projects and decide baths wil start at 10 am. Yes they had baths last night but I am thinking of anything to keep them from melt downs. Barbie texts and says she and her daughter will meet us at noon at the Broadway Palm theater as is Connie with Jessica and a friend. I am feeling good, the kids are all moving throughout he morning nicely and getting into their nice outfits as scheduled. Lucas is staying home and Kory is watching him so he will not freak out.
We get into the van.. Tressa has her baby doll, Steven has a magazine, Jordan is chatting a mile a minute with excitement. Kaitlyn has brushed one last time and we are now on our way. The drive is only about 5 minutes and we are there. Tressa questions if we are going to High School Musical. We hustle into the theater and go to pik up all 11 tickets. Connie is pulling in as we enter and Barbie is right after that. We take a potty break and head for our rsvp table right u front in the first row next to the stage. It is a buffet and we are all working together so that everything is flowing beautiful FLAWLESS. The kids are getting their plates and Tressa is DOING VERY WELL making the right choices on items and amounts. She knows she can get one desert and we will balance it out the remainder of the day (she has Prader-Willi syndrome and on 600 calories a day max food intake) The servers want to rush to get plates off the table and my Kaitlyn and Steven are very slow eaters although perfect for Ms Tressa. We manage to keep everything to a minimum and the show is about to start. The curtain opens and the singing starts …all their stars.. and Kaitlyn can not help but to belt out the songs (NOT IN TUNE) Steven isn’t as loud but the two of them..Oh My. Then all of a sudden Tressa starts crying hysterically. As if she is hurting badly. She can not catch her breath to tell me what is wrong and is gasping to the point others start to assist with her.. Asking if we need medical assistance..I HAVE NO IDEA.. she then gets out..”I can’t see TROY” I am stunned. Remember we are in the front row. She still is crying while everyone is moving chais and making she she has a clear view. She looks me straight in the eye and says with such emotion “I can’t see TROY” this time it comes across like a question. I have her moved next to me and I am rubbing her to try to get her to slow down and talk. She is still gasping for breaths. We are able to talk and it come apparent that in her mind we were going to a place…a world THE WORLD of High School Musical… the place she sees in the videos and TV there as his friend. In the school, in the gym and at his home.. HIS WORLD … as I try to explain it helps a little and I have to repeat much of it over and over as she really had it in her mind she was going to be his best friend. WOW… the theater manager tells me to have the kids stay put after the show. I hold out and when all the other people have left the building the cast comes out all of them!!! Troy was wonderful. Once he learned what had happened they hid from Gabriella and played with each other as he explained to Tressa he doesn’t live there. He told her he lives up near Boston (New York) and he has his own family like se does. He told her Gabriella is his friend but what they did on the stage is pretend. The entire cast was hugging, talking to and sharing their love with all the kids. Signing their autographs and fulfilling the kids’ dreams. AWESOME! After the show and meet n greet the girls went home with Connie for a girls sleep over and the boys and I went home to make a boys night something..



Saturday August 30th 2008 TOMORROW

The kids have been working so hard to get the points to attend High School Musical. Their points from school, behavior charts and keeping their rooms clean and chores up. The stakes were high as the event for us was a HUGE DEAL.

I had to take Steve and Kaitlyn to bowling for their last practice before county games are announced. I am using the drinks for focus..They have to make their 30 pins prior to me getting their drink. Kaitlyn got 3 spares in a row. She was on a hot streak. This is such a wonderful time for the three of us. When the little ones come it is work. Tressa struggles getting the ball down he lane each time and Jordan wears out after the first game so then I am working to keep them in line or busy.. the week I took them all DISASTEROUS. Medwaiver sends help to the house during bowling so that I can have this time with them.


August 28th thru 29th 2008-09-08




August 27th 2008
8:30 am meeting at Kaitlyn’s middle school to get things back on track so she can attend school and be successful inclusive… The team seemed to be workable although the plan will show as time passes. Everyone seemed very amenable. Her past teacher in Ele school attended and offered long time assistance if they need added supports. I was unable to get to the FICCIT meeting because of many mishaps… I do not have an address where I am suppose to be and then the 800 number is not answering. UGH
I need to regroup and get ready for the Focus group tonight which I am leading with Heather. We need to gather information about the cuts to our med waiver into tiers and many families just do not understand the tiers cuts. I am praying that I do not loose anything as my life is so much more meaningful for myself and my children with the supports we get as a family through the Developmental Disabilities Med waiver program. It is critical for our family.