Helping more children find love and happiness

Tropical Storm FAY; "STAY AWAY!"

It was a family day here with the van staying parked even with very tempting ads in today’s paper. Michelle dropped Ayden off for the day and took Keirsten to the mall for new shoes and a book bag from Hot Topics. The mall and nine small children (mine and Michelle’s) just did not appeal to me…Playing outside in the pool having ice cream cones seemed the better deal and I opted for that.
Ayden started walking this week and has a smile that just makes all who see it smile too. Lucas was jockeying for his spot to be the same while Ayden was here and it was really the first sign of “ownership.” A little whining today from sharing his chair and my lap although with reassurance he handled it like a big boy. I put dinner in the croc pot which made the house smell SOOOO good this afternoon, the goal to eat a tad bit early and baths in on time, bedtime routine maybe 15 minutes early and asleep before 8… The storm FAY is bringing in some bands of rainy weather so it is nice an overcast to create a more dark sky—easier for them to fall asleep to. So being 8 pm they are ALL ASLEEP! The alarm is set for 5:30 and coffee on…. The couch has everyone’s clothes, shoes and book bags upon it and the bus harnesses are next to the door.. lunch’s are made and in the refrigerator and I am SOOOOOO ready for some r and r so please; FAY, “STAY AWAY!!!” If you all remember when Charley hit our coast (MY HOUSE) it was the first week of school, the day we Moms had been looking forward to. Back then (4 yrs ago) I did not have the Medwaiver supports in home so that year I was on the edge the day Charley hit, over the top would be a good statement for me those hurricane days. Picture me with all the kids in a small hotel room and Kaitlyn having a broken foot in a cast and breaking the cast in the hotel at the pool. Oh my goodness I ust remembered the first day at that hotel and the kids having and accident (BM) in the indoor pool…. OH my, were those the days! LOL Now I am living each day with ease although the kids are the ones anxious to get with their friends.

I have a couple of very cute moments: Peter Pan has been a re-run video here for the week. Tressa came in to my room this morning and said… Mom I had a dream in my head, right here behind my forehead. You know what? Captain hook came into my room and put his sword in my back and made it bleed down my back to my feet…and you know what? Peter Pan came in so fast and saved me… He took me to where Tinker bell is getting her lights fixed because she was loosing her lights because she was sick….

Today was uneventful as a mom of MANY loves. The kids always get up before mom so the rule is they play in their bedrooms until 8 am. Like an alarm clock Tressa starts at the stroke of eight "Mom it's eight o'clock time for cereal" and those words repeat until mom gets the kitchen unlocked and milk into the bowl..... no way a snooze button will work. anyone interested in learning more about Tressa check out http://www.pwsausa.org/

We enjoyed breakfast and moved into the Saturday morning usual cleaning our rooms. Some weeks I need one of those HUGE snow shovels from up North to scoop everything to a pile... see if I send them all to their rooms to clean they have enough time to outwit me.well they use to. I believe they have passed room stuffing 110 graduate level... I mean they are CREATIVE.. so I beat them at their own game... Since I am out numbered here I sweep EVERYTHING not in the correct place to the center of the house... oh has this bit me more than once from unexpected Saturday morning visits... but hey.. we are a home of many and some things are necessary. So picture the center of our home with six kids "STUFF" everything not put away in a week in piles and they start to put everything one at a time into it's place. I then make a tasty cup of java and keep a watchful eye on the progress.. you know some like to hang up dirty clothes and other like to put clean into the laundry for quicker clean up. So we all work together as the washer runs, the kids find things they had lost all week and their rooms are sparkle clean.. I am in my room 1/2 the time doing my own room --Good example.. LOL

So once the major work is done our in home support person arrives so we can move on to Bowling leagues.. Only the bowlers are going so the other children can stay home and enjoy their last summer vacation weekend. The afternoon was spent with two at bowling 1:30 till about 4:30 pm and the others went to the movies. Once home we made dinner and the clothes from laundry put into closets for SCHOOL.... everything set for what they will wear Monday-Friday. Their book bags packed and by the front door with strict instructions not to get into them. A quick dip into the pool and dinner is done. Baths, bedtime routine and quiet time is here. Eight o'clock our support person leaves and it is a nice quiet home with some laundry going and the dishwasher in the background running..... the adult son is here to sit the sleeping children and now it is: My time. So off the blog and out to see some friends....... LIFE IS GOOD!

Oh what a day

I got to bed late last night and thought it would be an early morning with the grandson coming at 6:30 but that didn't happen because Mishelle over slept... So we got up had out when Mandie came to the door.... ouch! I was going early to SSA to straighten out some mishaps with mailing paperwork in. I gather my things and run to the SSA to sit..and sit,, and sit.. now once up I am told they can not open his case..so they call the worker....and get put on hold..IMAGINE THAT!. They give up copy the orig Birth Cert and some other papers and off I go, they will fax to the extended office in Tamps who did the phone interview.... I go to my van call the worker in Tampa and leave a detailed message on her voicemail. Off to Wal-Mart for food shopping.. piking up items for the weekend and Tressa's 600 a day calarie diet which a school lunch wipes out in three bites. I provide her feed for during school hours as a 600 cal a day diet is not in everyone ability to grasp. I will post a pic of how creative I have gotten when I make it Monday YOU WILL BE SURPRISED!

Back home to get Kaitlyn ready for her tour of the school so that I can walk her a few times from the bus ramp to her first period class. She has only entered through the front door and I feel this will be an issue of her not "feeling fit in" I really didn't want the aide at the bus and then her to a corralled group of special needs kids over there waiting for babysitters.... SHE WAS A SCHOOL SAFTY PATROL LAST YEAR FOR GOODNESS SAKE>... I am not feeling it right now.. who is going to be there when she starts her period? How will I know if she is where she is suppose to be??? I am feeling lost with this new school and NO ONE KNOWS ME... Y-E-T!!!!!
So we get to the school and nope no go not happening.... I am not going to be able to get on to campus today to walk her from the ramp to the first period class.. I CAN TAKE A FULL SCHOOL TOUR.. now that would not make sense for Kaitlyn to be completely confused... She knows what hall to go in and the numbers on her schedule to get from class to class I just needed to get her familiar with the ramp to the 1st class... I know safety but PLEASE... then I leave with the assurance this women in the office would direct her and just like I thought she will be taken to the office until her 6th grade para can come by to get her.... SHE IS SO PAST THIS BABY SITTING... now what happens at lunch time with an entirely different form of lunch room.. Like Disney world .. and Kaitlyn isn't going to think anything different. I NEED PEER SUPPORTS... Ok I need to give them a day well a few hours Monday and then I will go over to visit .....yes or no????

I left feeling like babysat is better than no one knowing she coming right?? She is going to tell them she is not a baby and she will walk to her room once she sees the hall.. We practiced the other night.

Now back home we decide to go fill the list of school supplies. We head back to Wal Mart and get 99% of everything and some new clothes for the little ones. Back home she packs her book bag and puts it by the front door. Jordan and Tressa jump into the shower so we can get to their open house.

SKYLINE ELEMENTARY I just love my team at Skyline, not that it has been easy all the time but they love my kids, are so bubbly and treat us like extended family. I am 100% INCLUSION and I am not pretending this is not really happening but they try... The school isn't INCLUSIVE... it has a population well over the norm because our county believes in spending bazillions on busing. It all started to meet a law suit from racial placement "equality" I guess people with disabilities do not fall into that civil law... so anyway it is so cute to see such excitement that the teachers and school are following the IEPs and then you here.... our entire class will move into that Gen Ed classroom so it will make for a smooth transition... HELLPPPPP but I smile because I do know for My child it is best for my situation, in my community. In a perfect world I wouldn't take it so easily. Our in home behavioral specialist went with us and the hour and a half went well other than Jordan acting shy... really wasn't himself.

The staff at the school stated I really look tired, I am feeling a little but just shopping at Wal Mart right now is a chore.

Jessica is here and everyone is stressing... I can handle her much better than the others. The dance is off, she wet herself. Movies and popcorn...

I fit in this blog....... Yipee

Our Lucas has fit in perfectly

When we started our journey to add Lucas to our family it was a roller coaster of emotions.. Timing for our family to "add on" never seems to be at the optimum moment although is there ever?? So as we moved forward things seemed to open us up to a little boy with more issues than we had ever been exposed to. SO much on paper, so much written and we hadn't met him.

I went June 12th - 13th and spend time with the family and with Lucas to see how we would be together Mom/Son. I will post that day photo! In hopes not to hurt ANY ONES feelings I will share our families "side" one might call it. When I spent time with Lucas in this environment I did not feel it was my place to advise although we were open about sharing and exchanging information. It was my opinion the family was not prepared for a child with institutional needs/behaviors. I observed some behaviors out of Lucas that scared me while there although when I got alone time I offered him substitute behaviors to see if he would stop self stem rocking/licking/banging. He stopped, so that made me feel strong in my pull to help this little boy although I must admit it was rattling me more than any other child I thought to bring home. I knew this was to be my son and I knew I could make him reach potentials I expected so we moved on. It all seemed odd... I have never been a part of a disruption; so many people are involved, each with so much adult "input/chaos." I stepped back so not to judge and hold a friendship with all parties involved. I have spent enough time with each to understand the "HOW" so today we move forward.

The first 10 days were us spending time in a hotel so that all the legal pieces could be put into place and this time was precious. We had no choice but to spend quality family time on top of one another... Much of the excessive self stem started disappearing in the10 days. The trust and fear was there at every move as I would expect. My mission was to get weight on him and start getting things in place at home (therapy) it was made clear by the end of the trip that just being a part of our family was therapy every day all day long and the advances Lucas was making was about being included with older active children in the middle of it all. He has to balance all the time as sibling pick him up, move him, bump into him, he has to fight back when he is having to keep a toy he wants or get one someone else has. Balance, strength and personality were building by the hour. He was learning my mommy look of stop or I will follow through and he responded...he stopped the undesired behavior and would search for something to put in his hand.

Once home we kept our family home life on schedule with our family routine. He had it down in a few days. We have not had only of the behaviors reported prior to our home. He waits for his meals... he has no choice as 6 kids is 6 kids any way you look at it. His diapers are changed about to dozen times a day as all the kids feel they need to help...so diaper and wipe expense should go down a great deal with school starting Monday. Lucas watches the kids eat and seems interested but not at all willing to even try a french fry. He is the best little boy, so says all my babysitters as well. He listens, he knows many of he everyday words, come here, eat, stop, no, etc... He goes to get his shoes when he sees us gathering to leave. He goes to where ever the kids are laughing and playing and laughs right along with them. He "talks" a great deal with his eyes... and LOVES TICKLE TIME. He will giggle just knowing it is about time to go into tickle time mode.

Eating is a chore. I feed him everything the kids are eating with some added bulk and into the food processor it goes. I add two extra meals to his day. Once a med. liquid he eats it all up. Anything else might come back up and until the swallow study I am not pushing it. Like Meredeth we live in Florida and the whole insurance system for Medical is an amazing journey itself... I believe we are now set or I will send off one of my ever so famous emails to the Gov office if not. SSI lost the orig court order and seemed a bit ticked that I wouldn't send in the orig birth Cert so tomorrow morning I will go sit and WAIT to turn it in to our local office.... a ton of fun for me.

So for all the Lucas followers JUST ASK... being a single mom and on summer school break I am run ragged just keeping towels clean and dry. I know there are some rules in our home that can use tweaking. My focus is and forever will be the children and their achievements. Just as all the reader hope it to be.

Lucas thru Miami for a loop.....

The Judge in Miami hasn't done an Adoption disruption in his career and felt he couldn't move forward until he understood the "complicated" case.... Ghee all the documentation is there, I cannot believe another snag to get simple paperwork completed. I need paperwork that says he is in my care LEGALLY.... I guess it thrills me that he hasn't seen disruptions although I know one will come before him again tomorrow so maybe he will learn more about these cases. I am told he will decide if he wants a full hearing or just meet with our attorney on Monday or Tuesday. It is 3 hours for me and $$$$ so I pray he picks up on it fast....

Today has been one of anxiety waiting for word and the kids anxious to get to school... The lists are growing and shopping is packed. I will go when help is here so the children can play as I fight the crowds.

Open house is tonight for Steven and Keirsten which both are the same school just new placements. Steven has had the same teacher for several years as the ESE setting (which I do not wish he was in) He is in Gen Ed most of the day but I am not convinced that actually occurs. You know you can just tell by the conversations, homework and such... Keirsten is now wanting to get into Challenger..Here is how a 14 year old decides schools.... "Where they go on their end of the year class trip"..... Where she goes to school now, they go to Bush Gardens for the day and the school Kaitlyn goes to has another destination and she is trying to figure out where that is..

I need Monday to come for the 5 hours of silence and a bottle of bubbly, oh that's right....I have a toddler this year..lol So I will settle for no arguing. His testing is Tuesday to get him into Pre-K at Skyline. I have my teacher preference.

Blogging will get better

As you can see this is not my forte' although over the past few weeks the importance of people being able to see what our family is about, CAN DO, is so important with all the old school thoughts of people born with Down syndrome not capable of living fulfilled lives.

Our family has been busy this summer as we added a new member who needed our full attention to make necessary gains in his health and trust in people. Lucas is growing and blending into our family as an ole pro.

My grandson went out to CA for a nice visit with his Dads side of the family and loved all the adventures out there. During the time my daughter was missing Christopher a tragic event occurred They took some time to attend our local ball teams game "Miracles" and got great seats behind third base. The shots Mandie got of the players were sharp and clear... until a line drive went from the bat straight to Lauriano's face and sent them into the ER in ICU. This seemed like a dream, something we were all watching as if a television show and not our family. In the passing days it just made no sense. How unusual this whole event was. We scrambled to make arrangements for everyone to be there as needed.

Today the future is uncertain, Lauriano is home with strict instructions to stay on his back and no pressure to his face at all. They are seeking 2nd opinions and making decisions on what surgeries to do and what path should be a wait to see. Lauriano seems most shaken by the ball players lack of concern that none have checked on him. He felt they should have made some attempt to know what was happening. The fans sitting next to them all had to leave as theyy were covered in blood, shocked by the event. A sound Mandie said she will forever hear and the screams from all the people around them.

Here we have been keeping busy weeding the flower gardens, keeping in the pool for the very hot days and grilling for friends. Mosquitos have been worse than prior years and the economy has kept us a bit closer to home this summer.

Family time to remember each day should be spent the best you can be.

I will daily blog as school starts and it will get easier I HOPE.. I would love for anyone to ask questions to help pull out folks real feelings on life as a person with Down syndrome... because we are more than willing to share with the world all the joys we live each day of our lives and the lives we have touched.

Count down to school year 08-09

We met with the first schools open house last night... Kaitlyn in middle school...YIKES!
I was pleased to see her scheduled had the classes she wanted as her first pick. She is carrying a full load including her first time in band. Learning music notes A NEW SET OF FLASH CARDS.

The school is new and very big. We went to each teacher and met them face to face with about 300 other students/parents/families. I am not clear on how her IEP will be met as the teachers didn't seem to be aware they were getting Kaitlyn... I am not clear when they get their students IEP folders.... I went to Guidance to discuss the para who will be working with Kaitlyn. when I got to a group of paras, they wanted to see her schedule. Claiming a 6th grade para would be in charge but they saw something wrong with the schedule... The statement was "I see a problem" She is in reading first thing in the morning. This is not how we do it. Then I hear, "well I will not be in there with her, she will be on her own." I said I am not concerned with her reading class I am concerned with her having help from the bus ramp to her first class in finding the building and classroom...with out being placed in harms way. They looked dumbfounded as I wasn't following how it is suppose to be. I have her in GEN ED classes. They then ask what setting has she been in???? I said Elementary School K thru 5th. What setting has all these other students been in? My daughter Keirsten (14 yrs) asked me if this is a prep school...... guess things were getting a little confusing.

I went to the office to introduce Kaitlyn to the staff and asked to talk to the assistant principle. He seemed nice enough and invited us to come back Friday at 1:30 for a tour. I told him we came through the front door and Kaitlyn will arrive on the bus so I need for her to walk the path to her first class to prepare her for Monday... He said this would be fine for Friday.. I asked if her para would be there. He said they all start working Friday but he wasn't sure what was on her plan for that day. I have a strong desire to go get Kaitlyn a cell phone....

Walking to the band room was a bit tricky and I saw many distraction for Kaitlyn to wonder to the gym, the ticket booths, or a number of other exciting looking spots on campus. Hope she has a fellow student helper to assist her to band...

I signed up for EVERYTHING PTA, SAC, Volunteer..... Signed Kaitlyn up for inventors club, spirit club as well. I want her in sports and as much as I can get her into.

So home we go and Cape Elementary is Thursday afternoon, Caloosa middle Thursday evening and Friday is Skyline..

MONDAY MONDAY MONDAY they are all so ready to get back into school and mommy is right there with them.

KAITLYN 'S SCHEDULE
CHALLANGER MIDDLE- TEAM COLTS!


8:46 am LEAVE HOME: Bus #122

ARRIVE AT SCHOOL: BUS RAMP

9:35-11:28 am PERIOD #1 & #2
ROOM 121 I.A. Reading Mrs. Whitman

11:31am-12:46pm PERIOD #3
LUNCH-----??? 25 minutes of this class????
ROOM # 124 MATH Mrs. Hein

12:49-1:34pm PERIOD #4
ROOM #120 Language Arts Mrs. Vagi

1:37-2:22pm PERIOD #5
ROOM #123 World History Mr. Huber

2:35-3:10pm PERIOD #6
BUILDING 2 ROOM 110 BAND Mr. Daniels

3:13-3:58pm PERIOD #7
Room #126 Science Mrs. Firrincieli